The following point has been included in Law 17/2020 of 22 December: Second-Order Violence. It consists of physical or psychological violence, reprisals, humiliation, and persecution against persons who support victims of violence against women. It includes acts that impede the prevention, detection, care, and recovery of women in situations of violence against women.

“There was unanimity in parliament. The legal protection that this law offers to supporters is already having a social and political impact in Catalonia. A growing number of institutions and organisations are reflecting on how to include this protection in their protocols. Attacks on those who support victims, which until now were against ethics, are now also against the law,” says Flecha García, who has analysed this form of violence in an article published in the journal Violence Against Women, to Sinc.

Without such legislation, the law that rules is the code of silence, which is the main ally of the harassers, as it guarantees the isolation of the victims

For the scientist, victims can only become survivors if they find support “and this support is only given, with honourable and heroic exceptions, with legislation and institutional actions taken against the cruel reprisals suffered by those who support them. Without such legislation, the law that rules is the code of silence, which is the main ally of the harassers, as it guarantees the isolation of the victims,” he adds.

“In Catalonia, both the associative movement and researchers committed to overcoming gender-based violence have been working together for some time. In the framework of the first research on gender-based violence in Spanish universities, some cases of second-order violence were already identified,” as Patricia Melgar Alacantud, professor and researcher at the University of Girona and member of the CREA Women's Group, has told Sinc.

This work, published in 2016 and co-led by Melgar Alacantud, gathered very significant data in this area, such as the fact that 91% of cases of aggression in Spanish universities are not reported.

I have no doubt that soon other autonomous communities, as well as other countries, will also include this type of violence in their laws

“I have no doubt that soon other autonomous communities, as well as other countries, will also include this type of violence in their laws. Ramón Flecha's article will play an important role. His courageous work rigorously analyses this reality that we all know and leaves those who frequently perpetuate silence regarding gender-based violence, isolate the victims or sow terror through their reprisals in a difficult position. I say courageous because researching gender violence, daring to make its existence visible in certain contexts, has a personal and professional cost”, the researcher reports.

The legal consequences of this step forward in Catalonia will mean that the protection of victims, as well as all the resources to which direct victims of gender-based violence are entitled, will now also be available to victims of second-order violence. This refers, for example, to accompaniment, psychological or legal assistance.

The testimony of those who have suffered it

In her study, Flecha García relies on the stories of six people - four women and two men - who have suffered second-degree sexual harassment in Spain. “Their stories allow us to define the characteristics of this type of violence and provide key elements for learning how to combat it,” she explains.

Researching gender violence, daring to make its existence visible in certain contexts, has a personal and professional cost

A secondary school teacher, a primary school teacher, a researcher, a man whose sister was abused by a family friend, a woman who is an active member of a political party and an employee of a non-profit organisation became victims of SOSH because they showed their support for the victims.

All of them suffered psychological violence, personal reprisals and in some cases reprisals on the job. In addition, in one case there was physical violence. Marina (not her real name) tells of how the man who sexually abused the girl tried to physically assault her after one of the cases of sexual abuse she reported.

The research shows that stalkers commit second-order sexual harassment through humiliation, threats and lies aimed at tarnishing the personal and professional reputation of victims and undermining their credibility.

Fear of reprisals

In Flecha García's research, the six people who shared their testimonies gave their consent to participate, subject to preserving their anonymity and not providing any information that could identify them. In all cases, the experience of second-order sexual harassment lasted for at least one year. Data collection focused on analysing the characteristics of this type of violence, identifying the particularities of each context and the social interactions surrounding these experiences. “Unfortunately, fear was also present in these interviews,” Flecha continues.

Reprisals are so cruel that if we leave it to individual heroism alone, the majority will continue to look the other way in specific cases and there will continue to be very few individual persons who support the victims,

“Reprisals are so cruel that if we leave it to individual heroism alone, the majority will continue to look the other way in specific cases and there will continue to be very few individual persons who support the victims,” Flecha García stresses.

Flecha recounts cases of families where the father abuses his daughter, but she does not receive the expected support because “mere internal denunciation within the family provokes a great deal of rejection.” He also points out that in the university itself, members of the equality commissions, after having supported the victims, “have been expelled from these commissions and are so afraid that they do not want this to be talked about”; and recalls one of the most famous cases in Spain, that of a professor at the University of Barcelona who was investigated for sexual harassment complaints from 14 people, which was sent to the public prosecutor's office when the statute of limitations had already expired.

Violence in plain sight

For Melgar Alacantud, the fact that these realities began to be made visible in the media and social networks “began to create a breeding ground, but at the same time it constituted an uncomfortable reality in the face of which you either become an accomplice or join in the efforts to transform,” she stresses. This second option brought together some researchers, lawyers, social movements, and policy-makers who placed importance on basing changes to the law on evidence.

In other areas, such as in some schools in Spain and other countries, clubs of 'valientes violencia 0' (‘0 violence brave persons’) have arisen. These groups act as a shield for potential victims so that they do not become victims. “These successful actions must be extended to the whole of society by passing appropriate legislation,” argues Flecha.

I have high hopes for this advance, but I also had them for the protocols against harassment when they began to be extended and, in some cases, left much to be desired

The University of Girona researcher also points out that it is important to differentiate between the results of research such as Flecha's and what will later be implemented by law. “I have high hopes for this advance, but I also had them for the protocols against harassment when they began to be extended and, in some cases, left much to be desired,” she says.

It is still too early to know how the implementation of the law will define the protection of these people, but what experts are aware of is that protecting them will promote support for those who suffer directly from gender-based violence.

The result was the discovery of “wonderful” spectral fingerprints that could be used to encode nanoparticles

Their texture, shine and colour reminded her of the dyes used on humans in the form of tattoo inks or even food. It was at this time that this biomedical engineer from the University of Southern California in the USA, who has a degree in nuclear medicine, thought that these pigments could have interesting optical properties and be used as fluorescence image contrast agents to detect certain diseases. She was right.

She contacted Adam Sky, a tattooist from the San Francisco area, who filled the 96 wells used as test tubes for Zavaleta's microplates with tattoo inks. The scientist then examined them with a Raman scanner, which allowed the sample to be illuminated with a monochromatic laser beam to see how it interacted with the molecules.

The result was the discovery of “wonderful” spectral fingerprints that could be used to encode nanoparticles, tiny spheres that transport the pigments through the blood vessels in search of malignant cells.

“We encapsulated various pigments in nanoparticles, which can carry several dyes at once and target cancer cells, and then detect them using optical imaging methods,” Zavaleta explains to SINC. She is focusing on finding effective contrast agents to diagnose cancer more accurately.

Early cancer detection

In her laboratory, this researcher’s team is developing new molecular imaging strategies using fluorescence and Raman imaging, aimed at detecting this disease, which covers up to 200 types. The aim is to guide doctors towards the cancer cells and provide them with functional information in addition to the structural details of the tumour they can already see.

The aim is to guide doctors towards the cancer cells and provide them with functional information in addition to the structural details of the tumour they can already see

“If we could give them visual signals that could help them differentiate the tumour from the adjacent normal tissue in real time (in the operating room), this could guarantee the removal of the whole tumour and improve the patient's overall outcome,” the researcher stresses.

These tools, which are still in the experimental phase and in need of further tests to ensure their safety in humans, make it possible to inject patients with these materials covered with colour pigments that increase the sensitivity of images obtained by magnetic resonance or computerised tomography.

Thus, when the nanoparticles are directed and concentrated in a specific place in the body, they cause the malignant cells to “glow”, making it possible to identify different types of cancer. Researchers can thus check, for example, whether a polyp in the colon is cancerous or simply benign, without the need for a biopsy, according to the study recently published in the journal Biomaterials Science.

However, until now there has been a safety problem with the use of nanoparticles because they tended to be retained for a long time in the liver and spleen, the organs responsible for breaking them down. But the food dyes that coat M&Ms, for example, are biodegradable materials, and also have a specific size that makes them passively penetrate the areas of the tumour and be retained longer for detection.

Currently, only three pigments have been approved by the US Food and Drug Administration (FDA) as contrast agents for optical imaging. “They all have fluorescent properties and can be used to illuminate structures in the body, usually during surgery or endoscopy,” Zavaleta has pointed out to SINC.

The scientific community now needs to expand its “colour palette” to guide doctors more effectively in the early identification of cancers, she believes.

Images obtained in mice with a PET camera detect different types of tumour thanks to the labelling of an antibody with a positron-emitting isotope. / Francisca Mulero (CNIO)

Virtual biopsies for metastasis

But once the tumour has been detected, other harmless imaging techniques are being developed that will allow virtual biopsies to be performed. These methods will make it possible to see biologically what is happening in the tissue in a few minutes without having to open it. They will also be able to detect a possible metastasis and predict whether the treatment will work or not.

These methods will make it possible to see biologically what is happening in the tissue in a few minutes without having to open it

This is how the Molecular Image Unit team led by Francisca Mulero, a doctor specialising in Nuclear Energy at the National Centre for Oncological Research (CNIO), can see inside a body thanks to still-experimental work being done with model animals such as mice.

In her case, instead of dyes, the scientists use contrast agents that emit positrons, the antiparticle of the electron. “This gives us an advantage over other types of contrast because they pass through the whole body. What is done with this equipment is introduce the patient and the tumour can be seen anywhere because these particles pass through all the tissues and this can be monitored,” she emphasises to SINC.

To achieve this, the researcher's group marks nano-antibodies, which are sent directly to the specific part of the tumour. There, an increase in signal and a concentration of gamma photons take place. “We can see what is happening there without taking any samples from the tissue. It’s a non-invasive method and will serve to monitor patients,” explains Mulero.

Unlike Zavaleta's technique in the USA, which allows an early diagnosis of the tumour, Mulero's research is very useful for studying its spread into other areas and the monitoring treatment. “Once the treatment has been started, we can see if there are any responses and whether it should be continued or not,” she continues.

Nanobodies created by camels

At the CNIO, the team uses these new contrast agents, specific to most tumours, marking tiny antibodies with positron isotopes to make PET (or positron emission tomography) images. In order to create these nanobodies, the researchers use camels living on the island of Gran Canaria, which are the only animals, along with sharks, that can generate them naturally.

The method, which will not involve very high costs, can be applied in any hospital with PET imaging equipment to patients with more metastatic tumours

“We inoculate a tumour protein into a camel, which is capable of developing very special antibodies that are very small (half of a normal one) before that protein, but which have all the immunogenic capacity of a normal antibody. These mini-antibodies, which are extracted from the camels’ blood, help us to see the metastasis later,” says Mulero, for whom the real problem with cancer is the metastasis and not the primary tumour. “It’s very difficult to detect, and when you do get to see it, it is sometimes too late.”

In the laboratory, researchers select the most effective antibodies for that tumour protein, add a marker to them and manipulate them so that they can be humanised, sometimes even by engineering the antibody itself. “This way the patient does not create antibodies from these antibodies. This is actually the vehicle that carries the isotope to the tumour. It knows where it has to go,” the doctor explains to SINC. 

But there is still a lot of research to be done before this technique reaches patients. “It won't take long because there have already been a few human trials in other countries. It doesn't really have any side effects, but what we have yet to see is whether they’re effective,” the expert from the Spanish research centre explains.

The method, which will not involve very high costs, can be applied in any hospital with PET imaging equipment to patients with more metastatic tumours such as lung cancer, but also with melanoma or prostate cancer, among others.

The next, recently-funded project of Mulero's team will go beyond the diagnosis of metastasis and proceed to destroy it, changing the isotope that emits a gamma radiation that is detected with the PET equipment to another isotope that gives off beta radiation, which disintegrates.

“This is the one that destroys. It’s what is known as theragnosis [a combination of the words therapy and diagnosis]. In this case we don't take nanobodies, but fragments of antibodies and create two isotopes, the diagnostic isotope to find out where the metastasis is located and the therapeutic isotope to destroy it,” explains Mulero. She explains that this would be like local radiotherapy, which could soon become a reality in human patients.

At least one in three doctoral students report significant mental health problems, according to some studies. The first article in this series quoted the causes that seem to be leading to this situation. Assuming that there is no single or easy solution, this third article collects data and proposals to alleviate the current reality.

On alternatives to research

One of the causes of the discomfort has to do with the scarcity of positions once one advances in the research world, a very broad-based pyramid in which temporary contracts follow one another, until the majority is expelled due to the extreme difficulty of accessing the higher echelons. It is a problem that is difficult to solve, accentuated by the current narrow view of what a doctorate is.

Fernando Maestre, director of the Laboratory of Ecology of Arid Zones and Global Change at the University of Alicante, claims: “We bosses should be aware that there is life beyond the academy, that whoever does not survive this environment is far from being a failure.”

As Matthew Lane, a researcher in materials engineering, said, “part of your job is publishing and doing research. But part of your job is getting another job.”

Some research centres are already starting to incorporate information sessions on alternative paths, such as industry, sales and marketing, science policy, intellectual property or science communication. But they are still few and far between and students face reticence. As Justin Chen has said: "We attended, but we kept our plans secret from our advisors out of fear that they would take us less seriously. Better to make it seem like we weren’t interested in networking or volunteering on the side.”

Gráfico elaborado a partir del informe 'The Scientific Century: securing our future prosperity' de The Royal Society, 2010. / José Antonio Peñas, SINC

Gregory Petsko, chairman of the commission that the National Academies of the United States created to analyse the experience of post-doctoral researchers, once said: “Grad school training is excellent and we should encourage as many people as possible to do so (...)but the problem lies in the beliefs that PhD students (and postdocs) hold of themselves: they don’t think they’re capable or skilled enough to take on anything else.”

In general, what they lack are the tools to know where they want to go.

For Maestre, a doctorate develops a large number of skills, such as “critical capacity, data analysis or decision making, which are highly valued by private companies. If we start to consider a scientific career only as an option, then the pressure decreases.”

On excess hours

An informal guide published in Australia stated that a doctoral student should work 50-60 hours per week. A Caltech professor sent a personal letter to a student to reprimand him for missing a weekend of work.

These schedules are not exceptional. A survey in Nature  revealed that 38% of the 13,000 young researchers worldwide who responded to the survey worked more than 60 hours, and 9% worked more than 80 hours.

The number of hours dedicated is not directly proportional to the number of publications and their relevance

Now, is this huge number of hours linked to increased productivity?

There are few objective data, but it is possible to make an assessment. An article published in Nature provides an estimate of the working hours of senior researchers in twelve European countries. At the extremes are Germany, with the highest number of hours reported (50 per week), and the Netherlands, with the most limited hours (up to twelve hours less per week).

We can also think of the United States as another example of a culture with a large number of hours dedicated to work, and of the Nordic countries as icons of fixed time, with times of departure around 5 p.m. (In the second installment of this series we interviewed the representatives of Spanish researchers in four of these countries). ) Data from a recent survey, also in Nature, conducted among PhD students around the world, point in this direction.

On the other hand, the hours of dedication can be compared with the results of a 2014 study that analysed the scientific productivity of 18 countries, both in number of publications -corrected by the funding dedicated to R&D- and in their quality, measured by the average impact factor in natural, medical and life sciences.

Even assuming the limitations of this comparison, the data indicate that, in number of publications, both the US and Germany are clearly behind the Netherlands and Denmark. Regarding impact, the US lies between these two countries, with Germany some way behind. Finland, Norway and Sweden are ahead of the countries with more working hours, with a quality comparable to that of Germany.

In other words, the number of hours spent is not directly proportional to the number of publications and their relevance.

A la izquierda, número de publicaciones relativas al gasto en I+D en 2012 (en unidades estandarizadas) e impacto medio normalizado de las publicaciones en el periodo 2009-2011, según un estudio publicado en 2016. A la derecha, horas semanales de dedicación al trabajo de los investigadores sénior en diferentes países de Europa, de acuerdo con otro estudio de 2013. A pesar de las limitaciones de esta comparación, no parece existir una relación directa entre las horas de dedicación y la productividad o la calidad. / J. A. Peñas, SINC

“We must banish the myth of the researcher who is obsessed day and night with his work, who continually sacrifices time with his family, friends and hobbies,” Maestre says.

“Working 50-60 hours a week is a mistake that weighs down originality and creativity. In our group we don’t do that, we work our 40 hours a week with weekends and vacations. It’s true that there are peaks of occasional work but it’s false that they should be sustained over time. And we're doing very well, both in terms of funding and publications. His group has, for example, a Consolidator Grant, one of the most prestigious grants awarded by the European Research Council.

“We must banish the myth of the researcher obsessed with his work, who sacrifices time with his family, friends and hobbies,” declares Maestre

Maria Blasco, director of the CNIO, acknowledges that “in laboratory work, especially at training levels, sometimes the project may require flexible schedules. In the end, however, the working day should be respected.”

Economic studies point to a two-way relationship between work happiness and productivity. Although a small survey among postdocs did not find a clear association between the two, it also did not find it to be negative.

Mental health studies agree in pointing out the difficulty of reconciling work and personal life as the main cause of discomfort in the researchers; and improving this situation does not seem to decrease productivity, but quite possibly the opposite.

On personal life and creativity

The balance between personal and professional life includes family time, but also other aspects, such as private time, for friends or hobbies. The latter have been viewed lately as a measure, not only of well-being, but also to encourage problem-solving and creativity.

“We need to stop seeing hobbies and work as zero-sum games,” says Alex Clark, vice president of research at the University of Alberta and co-author of How to be a Happy Academic. As Bailey Sousa, director of the International Institute for Qualitative Methodology at the same university and co-author of the book, has said, “people actually hide their hobbies, or pretend they don’t do anything outside of work, because they are worried about what people will think,”  As was the case with Justin Chen and alternative career training.

You can't stop someone from wanting to devote many more hours than stipulated, resulting in a competitive advantage and an unequal struggle

However, “we cannot prevent someone from wanting to devote many more hours than those stipulated,” says Maestre. That can lead to an unequal struggle between those who choose to live or sacrifice themselves like this, those who cannot live like this, or those who do not feel that a job should be like this.

“It's true that this can give a competitive advantage in the short term, but we bosses have to be aware that it’s not sustainable over time and that in the long run it can affect originality and quality, even the atmosphere of the group,” Maestre insists.

In any case, many contracts do not depend on the decision of the bosses, but on a curriculum that is valued by external institutions. “That's true in Spain, but not so much in other countries. At least, where we can, we should value more things,” says Maestre

On the glass ceiling

The culture of workaholism can particularly affect women. As Bryan Gaensler, an astronomer at the University of Toronto, explains, their “numbers drop off sharply at each higher rung of the career ladder.”

The culture of workaholism affects women's careers more, as caregiving roles are not evenly split

Numerous studies corroborate this statement, such as the European Commission’s periodic reports, which include the so-called scissors graph: women are in the majority at the start of a scientific career (55%), but their representation drops to less than 25% in the highest positions.

“This leaky pipeline already has many causes, without easy solutions. The reality is that parenting and caregiving roles are not evenly split by gender, even more so for scientists. Thus, if the scientific community follows the advice [on excessive hours], we are then even further fostering a culture that directly holds back talented women from successful scientific careers. And that limits the quality and breadth of ideas and discoveries,” Gaensler explains.

At the CNIO, directed by Maria Blasco, “not only do we have flexible schedules, but we don't put in essential meetings after 4 p.m. and we give an extra year for each child before the evaluation of the group leaders. We have a women and science office that monitors gender and work-life balance issues.”

On excellence

In the first part of the report, excellence was mentioned as an increasingly criticized concept, even by the European Commission. The hyper-competitiveness generated not only harms the environment in laboratories, but also the quality of science itself, which is increasingly lacking in reproducibility. Its most obvious consequence can be summed up in the slogan “publish or perish”.

For Fernando Maestre, “although it has been said many times, it is worth remembering that the impact factor of journals was not designed to evaluate individual results, and that it is a poor indicator of the quality of research.” However, many experts are unable to point to an alternative model.

The European Commission wonders whether “excellence could be a misnomer to assess the quality of scientific research in a world where processes, and not only outcomes, are increasingly subject of ethical and societal scrutiny.”

Changes for a new evaluation assessment system of science

This is the proposal of researchers from several institutions, including King's College London::

In addition, Nature points out there are other ways of sharing data that should be valued, in addition to the traditional article. Can a university that is not offering the right training be considered truly excellent?

On groups, bosses and the institutions

Two thirds of the group leaders admit that they have not received any kind of training and leadership course, and most of them are demanding this.

“Leadership courses should be offered to avoid discrimination,” says Maestre

I have learned by trial and error," acknowledges Maestre, “and I will continue making mistakes, but just as there are courses to improve teaching, leadership courses should be offered on how to deal with personal day-to-day problems in the laboratories, to avoid discrimination, to alert to cases of bullying or dishonest practices. Institutions should teach us how to have healthier working environments, because we must also take into account that the skills that students want to develop do not have to be the ones that I, as a boss, want them to have.”

Some institutions are creating new jobs: they are responsible for sustainable science. They are responsible for improving the working environment in the centre, addressing problems that have arisen and aspects that need to be improved, apparently with good results.

En este gráfico sintetizamos sugerencias para jefes extraídas de los artículos de Fernando Maestre: Seven steps towards health and happiness in the lab y Ten simple rules towards healthier research labs.

Whether in that or other ways, “institutions should do a surveillance job on their own groups,” Maestre maintains, because “working conditions and welfare remain a taboo subject, as shown by the number of researchers working without a contract or the fear of reporting possible reprisals. In reality, it would almost be enough to enforce the law.”

Maestre likes to say that “labs should be places where researchers are trained, not where people are destroyed.” Because “this is a real, widespread, global problem. It's not new, but it's new to talk about it.”

Let the conversation continue.

This report is the second in a three-part series. Our purpose here is to analyse occupational health risks among researchers, point out their causes and propose alternatives.

In the previous report we presented the mental health problem existing on a global scale in the world of scientific research. In this second part, we interviewed representatives of Spanish scientific associations in four countries: Germany, the United States, the Netherlands and Denmark.

Why these four? Available surveys (an estimate of researchers' working hours in 12 European countries and a survey conducted by Nature magazine among PhD students worldwide) suggest that Germany and the United States have longer working hours, and the Netherlands and Nordic countries, such as Denmark, have more rational hours.

We have asked all three of them the following questions:

1) What is the length of the working day in the research centres in the country where you work?

 2) Do you think that long working hours and an atmosphere of pressure improve scientific productivity? What other factors influence this?

3) What would you change in this competitive model on the basis of publications?

Noelia Lozano Vidal

Noelia Lozano Vidal

Chairwoman of the Association of Spanish Scientists in the Netherlands (CENL)

1) Working hours in the Netherlands are similar to those in Spain, between 38 and 40 hours a week. These hours are generally adhered to and it is normal to take days off if needed. For example, after having children, both parents can work four days a week instead of five, which is widely accepted both socially and at work.

2) Despite the fact that at certain times pressure and long working days increase productivity, if this situation is maintained or becomes chronic, motivation and analytical capacity decrease, tiredness and anxiety increase... And I think there are other factors that are critical too.

“The fact that people are not burned out and can separate work from life makes the atmosphere less toxic”

For example, here there is a lot of trust in workers and their ability to take their own decisions. The fact that people are not burned out and can separate work from life makes the atmosphere less toxic. It also helps that funding is better, wages are higher and there are more job prospects.

3) The system of evaluating CVs by publications is obsolete, there are many valuable aspects of research that are not seen in scientific articles, including negative results. Good work is not being valued, nor is the performance of tasks that are very necessary for the advancement of research, such as teaching, management and communication. Moreover, the demands are disparate in different areas and the ability to publish an article depends very much on whether or not the topic on which it is based is in vogue; but when it comes to evaluation, everything counts the same.

Alicia Pérez Porro

Alicia Pérez Porro

Chairwoman of the Association of Spanish Scientists in the United States (ECUSA)

Pérez Porro answers in her individual capacity and not as a representative of the association.

1) The working hours in American laboratories depend a lot on the field and the laboratory you work in. In general, I don't have the perception that people work more than in Spain, but I do have the perception that nobody comes here simply to heat the chair.

2) It’s not because of long working hours and a pressure environment that more is produced. These environments go against creativity and contribute to the publication of lower quality articles. What increases productivity is having a system behind you that supports you and allows you to dedicate yourself to your work, to research and to write your article, because it already takes care of everything else.

“It's not because of long hours and a pressure environment that more is produced, it goes against creativity”

3) What should be changed is the criteria for awarding projects and scholarships. Today everything is based on the number of articles and where you have published them. The publish-or-perish method has turned researchers into data-producing machines, rather than curious people who want to answer questions. Also, if you have to take time off your career because you’ve had a child, because of illness or because you are taking care of a family member, you are left out. That's how a huge amount of talent gets lost.

If the money were distributed according to other criteria, it would increase diversity. We would have more creative scientists with more capacity to bring about new discoveries.

Paula Fernández Guerra

Paula Fernández Guerra

Chairwoman of the Community of Spanish Scientists in Denmark (CED)

1) Full-time contracts in Denmark are 37 hours per week and great importance is attached to family reconciliation. In science, there are differences. At university, the hours are quite flexible, and the usual overtime is around 45 hours. In hospitals, people usually work from 8 a.m. to 4 p.m. Companies have less flexible schedules, but overtime or weekends are exceptional.

2) In Denmark the departments for the prevention of occupational risks have a person responsible for “happiness at work” or job satisfaction, which has arisen from different studies that show that it is linked to greater productivity and fewer sick leaves. However, we do not know if there are any specific studies on scientific productivity, but there are studies that indicate that researchers undergo more stress and pressure than workers in other sectors.

“The pressure to publish exists; however, dissemination, the organization of congresses and the supervision of students are also valued here”

3) The pressure to publish exists, however, here other aspects are valued, such as the dissemination of science, the organization of congresses or courses, the supervision of students... The objective is to reduce the pressure to publish and to value researchers as a whole.

The publication of negative results or studies that reproduce results should also be favoured, since one of the sources of pressure to publish lies in being the first to do so. If you fail to do so, you are considered to have been unproductive.

On the other hand, greater job stability and funding would increase the quality of research. This pressure and job instability are the main reasons why half of all science-related professionals in Denmark prefer to work in the private R&D system, one of the country's main economic drivers.

Elisa García

Elisa García

Coordinator of the Work and Science Policy Committee in the Society of Spanish Scientists in the Federal Republic of Germany (CERFA)   

1) It is very difficult to make a generalization. The only data that exists are those obtained through surveys of workers, for example, that carried out by the internal association of Max Planck doctoral students, PhDNet, which talks about working days of 46 hours per week on average (of 50 hours in Biomedicine), 11.2 hours more than their contracts stipulate. 26 % and 29 % work two and three weekends per month respectively. Ten per cent said they worked every weekend and only four per cent said they never worked at weekends.

2) In meritocratic systems it can be expected that, when competing for limited resources, productivity will increase. What increases is the number of publications, but this is not always linked to quality. At the same time, there is also an increase in unfair behaviour, scientific fraud, non-reproducibility, the search for publicity impact and instability. Most alarming is the impact on research personnel, who have a higher incidence of depression and anxiety.

“This meritocratic system not only increases productivity, but also unfair behaviour, scientific fraud and instability”

If we were to measure productivity by other criteria, such as continuity, reproducibility, long-term impact, patents, collaborations, quality of training and professional development of researchers, then perhaps productivity would not be increased by putting pressure on this competitive system.

3) I believe that we should rethink what we want to give back to society and, on that basis, generate the criteria for measuring merit. We must provide the academic system with greater stability in funding. It is not productive to be constantly starting new projects or producing non-reproducible data simply by increasing publications to get funding.

To conclude, we should increase the outflow of research personnel to other sectors so as not to generate such high competitiveness and take advantage of this highly qualified human capital. At the same time, improving leadership and management skills would improve the mental state of researchers and their productivity.

In the next issue, we will address proposals for improving psychosocial conditions in science. A preview: in this graph we synthesize suggestions for bosses taken from Fernando Maestre's articles: Seven steps towards health and happiness in the lab and Ten simple rules towards healthier research labs.

7 consejos para liderar equipos mentalmente saludables

“The night after my thesis defense, falling asleep in bed, I reviewed the past six years of my life. I thought of the first time that I saw fish and frog embryos, and the gleaming, wooden table where my adviser and I had hours-long conversations about biology. I thought about the experiments and obsession and isolation. I saw my 20s passing by in a flash and wondered: Was it worth it?”

These lines were written by former American researcher Justin Chen in the STAT Scientific journal. His article, which is very critical of the way of life in research laboratories, generated a flood of responses in line with his vision. For example:

I started grad school with enthusiasm and ended, like most people I know, slightly bitter and just wanting the pain to end.

I envied those who weren’t bound by the confines of the lab, who didn’t have to cut social activities short to “run to lab to check on cells” every weekend, if only for an hour.  (...). I spent so much time in the lab that my kitchen at home was empty — I kept all my food in the bottom right drawer of the communal fridge.

“I feel that I exist in a bubble that I struggled terribly to get inside and cannot, now, get myself out of,” lamented one researcher

Other voices offered an alternative vision:

I would play devil’s advocate and say that for some people, perhaps those that are more inclined to be different or reclusive, graduate school is a breath of fresh air  (...) I loved graduate school. It allowed me to be absorbed in things that I love and to create my own routine. I worked too much by anyone else’s standard and would do it again in a heartbeat.

But perhaps the best summary of the answers is the following:

The work is rewarding but to this day I feel that I exist in a bubble that I struggled terribly to get inside and cannot, now, get myself out of. I applaud J. Chen’s honesty. It is the beginning of what I hope will be an important conversation.

The elephant in the room

The quality of life and working conditions in the laboratories have been the elephant in the room that for years almost everyone saw and hardly anyone dared to talk about. And the conversation seems to have begun.

Recent work has shown the mental health problems affecting researchers, especially the youngest ones. Nature magazine has begun publishing surveys and conducting monographs on the subject. The model by which science is measured, based on a supposed excellence that promotes hyper-competitiveness, is beginning to be questioned.

40% of doctoral students present symptoms of anxiety or depression, a probability six times higher than the general population

In 2018, a study published in the journal Nature Biotechnology showed alarming results. After surveying more than 2,000 PhD students in 26 countries, they found that 40% of them had moderate or severe symptoms of anxiety or depression, “more than six times as likely to experience depression and anxiety as compared to the general population,” the authors claimed. The risk was even higher for women and transgender or gender non-conforming people. Two related factors were the difficulty of reconciling work and personal life and a sense of lack of support from their mentors.

The data was alarming, but not new. A year earlier, a study made among more than 3,000 students in Belgium found that up to half of them had at least two symptoms of poor mental health and a third had four or more, implying a high risk of depression. Comparatively, this is between twice and three times more likely than with other people with higher education who have not chosen a research career. Of the reasons, the most important was conflict between family and work. Among the protective factors, curiously, was the feeling that a career away from research would follow.

Sunsets in the Lab

A review of studies published by the Royal Society of England came to very similar conclusions, noting that only 6.2% of workers reported it to their institutions (out of an estimated 37% who might have a mental health problem).

A recent survey of more than 6,000 PhD students worldwide yielded slightly conflicting data: 38% were very satisfied with having chosen that path and 75% said they were satisfied to some extent. However, up to 36% admitted to having had to ask for help because of anxiety or depression.

“Work-life balance is hard to attain in a culture where it is frowned upon to leave the laboratory before the sun goes down,” authors say

Although most of this work has focused on the youngest students, several of these problems also seem to extend to post-doctoral researchers, who are in an intermediate position. And, to a much lesser but still considerable extent, to the seniors, who lead the research groups.

The authors of the first article concluded: “Faculty and administrators must set a tone of self-care as well as an efficient and mindful work ethic in order to move to a healthier work and education environment.” Because “work-life balance is hard to attain in a culture where it is frowned upon to leave the laboratory before the sun goes down. The stress of increased pressure to produce data in order to compete for funding has increased exponentially, and science fields are feeling immense pressure.”

In search of the causes

“This is a global problem, but one of the main causes is that there are very few positions in the research career compared to the number of people who apply for them. That leads to fierce competition," says Fernando Maestre, director of the Laboratory of Arid Zone Ecology and Global Change at King Juan Carlos University, who has published several articles and opinion columns in Nature magazine on how to improve the quality of life in laboratories.

José Antonio Peñas, SINC

There are hardly any national statistics on the life cycle of researchers. The best-known study is that conducted by the Royal Society in 2010, and the data it presented is alarming. When it comes to defending the thesis, more than half are leaving or have already left science, and only 3.5% will ever have a stable position in academia. A large number of those who continue will be on a succession of temporary contracts and will also end up leaving or, to a lesser extent, redirecting their careers towards industry.

An informal guide points out that 60 hours a week is the working day of a successful career. “If research is your passion, this is actually easy to do, and if it isn’t your passion, then you are probably in the wrong field.”

Added to this is the pressure to publish as many articles as possible and in the most important journals, as publications are the main requirement for obtaining the necessary funding. “That leads to hyper-competitive environments, even within the same group,” Maestre says.

“I see bosses who think of doctoral students more as a workforce than as trainees. It's a conflict of interests crossed with a lot of outward-looking hypocrisy, even if one admits that the system tends to enforce that situation,” he continues.

This means that, in the words of Gareth Hughes, a researcher on student welfare at University of Derby, we have "lost a lot of researchers who were very good academically because they couldn't survive the toxicity.”

An informal guide published by several members of the Queensland Institute for Biomedical Research in Australia states: “Work hard. Don't think you can get away with a 38-hour week. You will need to work long hours throughout the week, and for part of most weekends. That gets you closer to a 50-60 hour week, which is what you need if you want to have a successful career in academia (or indeed in any professional career). If research is your passion, this is actually easy to do, and if it isn’t, then you are probably in the wrong field.” This sacralisation of the scientific vocation is, for Maestre, “a source of exploitation.”

New models of good science

In 2015, Science published an article by University of Toronto researcher Eleftherios P. Diamandis under the title Getting noticed is half the battle. This said about his early days in research: “I worked 16 to 17 hours a day, not just to make progress on the technology but also to publish our results in high-impact journals. How did I manage it? My wife—also a Ph.D. scientist—worked far less than I did; she took on the bulk of the domestic responsibilities. Our children spent many Saturdays and some Sundays playing in the company lobby. We made lunch in the break room microwave.”

Against possible criticism, he ended his article as follows: “Our daughter, by the way, is now a Ph.D. scientist working as a clinical chemist, and our son is in training to become an M.D.-Ph.D. neuropathologist. My wife is a senior scientist at a major teaching hospital. Making sure you are noticed can give you the edge you need over your silent competition.”

Maestre says that “we need new successful scientist models, beyond the white man who is obsessed with research day and night.”

Apart from this vision and the possible intra-history of the Diamandis family, Maestre assures that “we need new successful scientist models, beyond the white man who is obsessed with research day and night. We need them, and they exist.”

For Maria Blasco, director of the National Cancer Research Center (Spanish acronym: CNIO), “it is true that in laboratory work, especially at the training level, sometimes the project may require flexible schedules. Ultimately, however, the 37.5-hour working week should be respected.”

Another reason for this situation in the laboratories is the lack of training in leadership for researchers. In a survey conducted by Nature magazine, up to two-thirds of group leaders said they had not had this type of training. Of the remaining laboratory staff, 40% thought that mentoring their leaders would improve the science being done by the group. Among those less satisfied with their situation, 70% indicated that as their greatest wish.

Gary McDowell, executive director of Future of Research, an advocacy organization for young scientists, summarised the scene as follows: “The communication of experiences between senior and junior researchers is dismal. They live almost in separate worlds.”

Excellence, an Escher hand?

Above or below all these issues is the concept of “excellence”, a vague term that marks the distribution of resources, which could be summarized as “to be good is no longer enough; excellence, by definition, must go beyond that” and which would include “some combination of research quality, along with impact.”

In general, it is based on the impact factor of the journals where the results are published. An Escher hand drawing itself and in which the way of evaluating conditions the whole way of producing.

That system is being questioned. For the director of the Wellcome Foundation, Jeremy Farrar, “the emphasis on excellence in the research system is stifling diverse thinking and positive behaviours. (…) [It] has created a culture in modern science that cares exclusively about what is achieved and not about how it is achieved.” 

For Farrar, “the emphasis on excellence is stifling diverse thinking. It has created a culture in modern science that cares exclusively about what is achieved and not about how it is achieved.”

According to Farrar, focusing on excellence contributes to “destructive hyper-competition, toxic power dynamics and poor leadership behaviour.” That impact is not merely related to the quality of life in labs, but to science itself.

Some hold it responsible for the growing problems of result reproducibility, fraud and homophily, the concept whereby one tends to reward that which is keeping with what is normative and in which the reviewers already have previous experience.

Maria Blasco is far more optimistic. “It's true that science is competitive, but no more so than any other profession based on meritocracy,” she says. “Science evaluates the merit and importance of discoveries, which is something measurable and not subject to subjective assessments. These measurements can be highly varied, from the impact of journals to the number of citations of papers or the impact on innovation in terms of number of patents, spin-offs, sales, etc.”

However, criticism of the system is already under consideration by the European Commission. In a paper interviewing a number of researchers, it was noted that “the idea of excellence as a measure of science quality makes many people uncomfortable,” but that “these people — despite their discomfort — cannot suggest anything better, given that science and scientists must meet political demands of accountability and assessment.”

It's difficult, but there are already some suggestions to incorporate into the debate. Some of these will be discussed in the second part of this report, along with an analysis of scientific productivity by country and living conditions in their laboratories, as well as proposals for improving the latter. Because, as Gareth Hughes said, “there’s a belief that doing a PhD should make you ill, if you’re doing it properly. It’s bizarre.”

Sir Thomas Browne. Religio Medici

“It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”

That's what Ken Murray, a retired Los Angeles family doctor, said in 2011. He did so in an article entitled How Doctors Die (It’s Not Like the Rest of Us, But It Should Be), in which he also said: “Of course, doctors don't want to die, they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what people fear most: dying in pain and dying alone.”

That text continued to be shared and republished in subsequent years, giving rise to discussions about “why doctors routinely administer treatments to dying patients that they would adamantly refuse for themselves.”

His impression was personal, based on his own experiences and exemplified by that of a doctor friend who was diagnosed with pancreatic cancer. The surgeon who treated him spoke to him about a new technique that moderately improved the expectation of remaining alive after five years, but in exchange for a considerably worse quality of life. He refused treatment, decided to go home to spend more time with his family, and died there, without returning to the hospital.

After his article, objective studies were made and the data contradicted Murray. When healthy people are asked about the type and number of treatments they would like if they were close to death, doctors are clear that they prefer much less.

However, a 2016 paper analysed the deaths of more than 200,000 U.S. citizens, including nearly 10,000 physicians. Although they used palliative care a little more, they spent the same amount of time in the hospital during their last few months as the rest of people, even somewhat more in intensive care.

Another work of the same year with 600,000 people did see that doctors died somewhat less often in hospital, but only 4 percent less, and many of the differences had more to do with socioeconomic status than with the profession.

Is there any difference in how doctors live illness and death? What does a continued contact with both in their own lives entail? Why is it so difficult to die well?

And what is dying well, after all?

Pursuing death

“I had started in this career, in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking (...) But in residency, something else was gradually unfolding. I was not yet with patients in their pivotal moments, I was merely at those pivotal moments. I observed a lot of suffering; worse, I became inured to it.”

These lines were written by neurosurgeon Paul Kalanithi in his book When Breath Becomes Air, shortly after being diagnosed with fatal lung cancer in 2013, at the age of 36. Kalanithi remembers his ongoing relationship with death and describes how he experiences it when he has to face it in person. Doctors may be better prepared for it.

“I’d say there’s no clear trend,” replies Agustina Sirgo, a psycho-oncologist at the Sant Joan Hospital in Reus and president of the Spanish Psycho-oncology Society. “There are no studies on the subject, and they’d be very interesting, but my personal impression is that the answer is no,” she continues.

“Perhaps the first layer of discourse, the first reaction may be different, sometimes through a scientific-technological escapism, but ultimately the core of the physician is a human being to whom the profession may or may not be of use. The question is not the level of one’s relationship with death, but the impact it produces and how one reacts to it. Many people not related to health may have such experiences and incorporate them in their favour,” Sirgo adds.

“I wouldn't know what to say,” admits Fernando Marín, a doctor specializing in palliative care and president of the association Right to Die with Dignity (DMD, from its Spanish initials). “My impression is that it depends on the person and his or her way of thinking, his or her fears and previous close experiences.”

Marcos Gómez, honorary chairman of the Spanish Society for Palliative Care (SECPAL) and one of the promoters of this discipline in Spain, feels that “there are no big differences. I don't know what will happen when it affects me, although I would say that right now, with experience, I'm less afraid.”

A few pages later, once the diagnosis of his lung tumour was known, and as a personal answer to Marcos Gómez's question, Kalanithi writes: “Death, so familiar to me in my work, was now paying a personal visit. Here we were, finally face-to-face, and yet nothing about it seemed recognizable.”

There wasn't largely because, despite the ongoing relationship with patients, “you don’t appreciate the mounds of paperwork that come along with it, or the little things. When you get an IV placed, for example, you can actually taste the salt when they start infusing it. They tell me that this happens to everybody, but even after eleven years in medicine, I had never known.”

(...) Simply, “racking back pain can mold an identity,” Kalanithi says.

Is there, then, any way to be prepared for death from the standpoint of health? Assuming, as Cicero and Montaigne once said, that “to philosophise is to learn how to die,” Irish physician Seamus O'Mahoney wrote an article raising the question of whether philosophers died better than doctors. The bottom line is that, generally speaking, they do not do so especially well. Their choice, therefore, is to forget it until it is near and visible, preferring to think about what he will cook for dinner. Another way to think about it is to bear it in mind as a rumour that does not interfere with one’s daily life, but allows one to recognize it as it comes nearer.

“That may be an option,” Sirgo notes, “but bearing in mind that thinking too much about it can tangle life and that, until then, no one knows how they will react. The here and now will be the one corresponding to that moment.”

The other big question is how to do it once the time has come. And what not to do.

What it is to die well (and all obstacles)

«Just before he died, Tolstoy said, “I don't understand what I'm supposed to do.” »

Anatole Broyard. Intoxicated by My Illness (And Other Writings on Life and Death)

Anatole Broyard was a literary critic diagnosed with advanced prostate cancer in 1989. His reaction was strange and particular, and he included it in an e-book entitled Intoxicated by My Illness: “It seemed to me that my existence, whatever I thought, felt or did, had taken on a kind of meter, as in poetry, or in taxis.” (...) “In this phase I’m infatuated with my cancer. It stinks of revelation.” This reaction is not common, but it shows the variety of ways of facing illness and that there is no exact way to describe what “dying well” is, although for Marín it could be summed up as “dying the way you want.”

What seems clear is that we die worse than we should. For example, “up to 25% of patients with advanced cancer receive aggressive, objectively defined end-of-life treatments,” says Marín. Without going any further, among a sample of 1,001 patients at the University Hospital of Santiago de Compostela, 19% received doses of chemotherapy in the last five days of their lives.

“Quality of death is not a social value,” continues Marín, who is alarmed to explain that “25% of doctors do not even know if the living will is regulated, which is almost like saying they do not know about insulin.”

“Hospitals are built to diagnose and cure. Death is an intruder in them,” assures Marcos Gómez. This may be borne out by the fact that up to half of Spanish universities “do not even offer the subject of palliative care,” and at the hospital level "we rank 31st out of 49 in the European Union in this area.” According to Gómez, this means that “75,000 people die each year in Spain with suffering that would be avoidable, including 1,100 children.” Palliative cures are not an end in themselves, but “a means to die well,” concludes Marín.

The image with which healing at the end of life has sometimes been compared is that of a train that advances with the inertia of healing and from which it is very difficult to jump. “That, along with the fact that people change their thoughts in desperate times, could explain why even doctors don't die better,” Sirgo reasons.

Right now, in Spain there are ten autonomous communities that have a specific law of dignified death, but “in reality there is a lack of political will,” says Marín critically. “It’s basically a pedagogical law, a catalogue of good intentions. In real practice there are no differences between those who have adopted it and those who haven’t.”

According to Marcos Gómez, honorary chairman of the Spanish Society for Palliative Care, “75,000 people die each year in Spain with suffering that would be avoidable, including 1,100 children.” / Adobe Stock

What is called for is a law accompanied by budgets that would make it possible to “increase palliative units and design appropriate plans for each place, giving much more importance to the value of the living will and the right to die in a single room,” he adds.

He also insists on improving home-care services, because “everyone's home is the preferred place to die. And the cheapest,” says Gómez, for whom right now the way to die is almost “a matter of luck that depends on the region, the hospital and, ultimately, the unit that happens to deal with you.” It is clear to him that “it couldn't be easier to programme an operation than a help to feed them and clean up in their own home.”

Ethical conflicts

"What a critically ill person needs, above all, is to be understood. Dying is a misunderstanding that must be cleared up before the end”.

Anatole Broyard. Intoxicated by My Illness.

In Tolstoy’s novel The Death of Ivan Ilych, what tormented the protagonist most “was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill.” This phenomenon, which has been called ‘the conspiracy of silence’, affects “50% of situations in palliative care,” explains Marín. This is largely due to families, who generally act with the good intention of “protecting” the patient. But it is also due to doctors, “for whom it is often not a priority and whom it leaves in a more comfortable position.” However, “this is an irresponsible attitude that hinders the process of dying well. Although there are people who disagree, there is no right not to know.”

For Marcos Gómez “there is a very serious communication problem. It is sometimes a question of lack of time, but also of training. Doctors have not been taught, and it is not only a very important medical act, but possibly also the most difficult.” An act that, according to Sirgo, must be done “with the right time, respect and generosity. And without prejudice on both sides.” Kalanithi was lucky with his caregiver, and thus described a moment of that stage together:

“There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss.”

That was also Broyard's quest, that of “someone who is able to go beyond science and reach the person... who is able to imagine the solitude in which critically ill people live,” because he could see “no reason why he has to stop being a doctor and become an amateur human being.”

In this relationship at the end of life, other types of conflicts also appear, such as that of the possible induction of death when the time comes and the case arises. There is a fine line, a very important one for some, between non-intermittent palliative sedation and active euthanasia.

The former consists in putting the patient to sleep with the added possibility of interrupting his nutrition and hydration, which leads to death within a short time. This “is done more often than is said,” says Marín. In the latter case, a lethal dose of some substance is administered, which is the direct cause of death. “Deontologically it's something very different,” says Gómez, who, unlike Marín, is opposed to this second practice.

Gomez prefers to focus on the absolute need to improve palliative care and end-of-life care. “Putting the focus on euthanasia is like putting the cart before the horse. Every day a hundred people die in Spain waiting for the dependency help to which they are entitled. Euthanasia could be a solution for approximately 3% of us, for up to 50% we are going to need palliative care,” he laments with astonishment.

Although he is against euthanasia, he has been asked to give his opinion on the latest media case, that of the now-accused man who helped his wife, who had multiple sclerosis, to die. “I would have done the same!” shouts Gómez. “They'd been applying for a nursing home for ten years, that's what’s disgraceful!”

The epilogue to Kalanithi's book was written by his wife shortly after his death in 2015. She tells of what happened at home, without any therapeutic obstinacy, controlling the symptoms: "He knew he would never be alone, never suffer unnecessarily.

Paul Kalanithi with his baby, Cady, born after he was diagnosed with incurable cancer in May 2013. The doctor died at home in March 2015, when Cady was eight months old. His testimony of those years overwhelmed patients and colleagues.

False appearances.

The blocks are actually some of the most modern genetic sequencers of the moment: the driving force behind the National Centre for Genomic Analysis (CNAG), in Barcelona. They are shown to us by Holger Heyn, a German who has been researching in Spain for nearly ten years and who is now in charge of the Single Cell Genomics team at the CNAG itself.

This cell-by-cell analysis is the great scientific hope to unravel the development of organisms -including humans-, to establish the bases for the regeneration of organs, to create a map of all our cells or to uncover keys to some diseases as elusive as cancer. That is why it has been chosen as the scientific advance for 2018 by Science magazine, and that is the reason for our visit.

Of milkshakes and trees

“Unicellular genomics has reached maturity in an incredible way,” declared Eric Lander, the most influential director of the Broad Institute at MIT and Harvard, during a conference some time ago. “And once you realize that we can do the tests on individual cells, how are you going to accept a milkshake? It's crazy to be doing genomics on milkshakes.”

We visit the main lab dedicated to cell to cell analysis in Spain: the CNAG of Barcelona / CNAG.

Los ‘batidos’ de Lander son los análisis tradicionales donde se recogen un montón de células cuyo ADN (o ARN, el mensajero del ADN) se mezcla antes de pasar por los secuenciadores. La información que resulta es un promedio del conjunto. Habrá árboles particulares que queden ocultos por el bosque y, sobre todo, no permite saber qué información concreta contiene cada célula en particular. El individuo se disuelve en la masa.

Cell-by-cell analysis is the great scientific hope for uncovering clues to diseases as elusive as cancer

Lander’s ‘milkshakes’ are the traditional analyses in which a bunch of cells are collected, their DNA (or RNA, the messenger of DNA) being mixed before going through the sequencers. The resulting information is an average of the set. There will be individual trees which one cannot see for the forest and, above all, the method does not allow us to know which specific information is contained in each particular cell. The individual dissolves into the mass.

These analyses had already been chosen as the Method of the Year in 2013 by Nature magazine. “But by then only ten or twenty cells could be studied; the method was tremendously expensive and very unresolved,” Heyn comments. Now, instead, “we can analyse 10,000 cells in a single experiment and there are projects to do so with up to one million”.

The key technology that has made this leap possible is micro-fluids, a tool that allows each cell to be separated and channelled into tiny droplets while a marker or bar code is introduced into its DNA. This marker makes it possible to identify each one of them once they have been analysed.

In this way, its DNA, its RNA and even its epigenetic information can be studied, because it puts the dots and commas on the genome´s reading. “The resolution is not perfect yet in any case,” Heyn admits, “but the most powerful thing right now is the study of the RNA.” The acknowledgement of the advance of the year was based on some of these studies.

A worm that grows cell by cell

The Schmidtea mediterranea planaria is a very unusual animal. This worm, which is barely a centimetre long, is potentially immortal: its stem cells continuously renew its organs and, if it is split into several pieces, a new worm emerges from each one. The head can regenerate a tail and the tail a head, which even seems to preserve some of its memories. It was discovered by biologist Jaume Baguñà in a Montjuich reservoir in 1968. As far as we know, today it is barely to be found in Barcelona, in certain areas of Menorca... and in around twenty laboratories all over the world.

Photo of a 'Schmidtea mediterranea' with two heads in an experiment carried out during the regeneration of the body/ Dany S Adams

One of them is at the Max Delbrück Molecular Medicine Centre in Germany. There, in 2018, they used cell-by-cell analysis techniques not only to establish a cell atlas of the animal, but also to study the genetic programs that led to its formation and regeneration. Among other surprises, the researchers found that the number of some cells was decreasing very rapidly. This indicated that they could be the reservoir that fed the regeneration process.

Could these discoveries be applied to humans to boost regenerative medicine? “We still have a long way to go,” reply Mireya Plass and Jordi Solana, the first two signatories of the work, in a consensual letter. “The adult planarias have more than 30% of stem cells, which is very far from us. Even so, we hope that some of the mechanisms are the same.”

What is clear to them is that before they were not able to distinguish the different types of cells in embryonic development, and now they are going to collect information “that will be crucial for the laboratory generation of cells, tissues and organs that serve to treat different illnesses.”

Experiments with the Cortázar amphibian

There was a time when the writer Julio Cortázar “thought a lot about the axolotl”, to the extent of even writing an amazing tale on these hypnotic amphibians that are often mistaken for salamanders and that, like them, are capable of regenerating their limbs, the skeleton included. Cortázar was obsessed with its gaze, but how do they achieve this immense power of renewal?

Using the new arsenal of techniques, German researchers have ascertained how a particular type of cell is deprogrammed to return to an embryonic-like state and, from there, direct regeneration in the axolotls. Our very limited ability to achieve something similar may be due to the inability to reprogram this type of cells to those states. Our liver or skin may partially regenerate, but they are exceptions. We cannot do the same with a leg, a kidney or a heart.

Thanks to these techniques we have been able to see how the axolotl cells act to regenerate their limbs

Here the crucial analysis is that of RNA. DNA does not provide valuable information: it is essentially the same in every cell; what matters is how the code is read in the form of RNA at every time and place. This is what makes it possible to study how, from a single cell, an animal is formed with all its organs and tissues, very different from each other but quite equal in its initial genetics. How we are what we are.

This has been done by other research groups in 2018 with fishes and frogs, seeing how the genes in each cell are turned on and off during their development. And so they have been able to track the development of the brain and spinal cord of a mouse until the 11th day after its birth, identifying along the way more than a hundred different cell types.

“These are very nice studies,” Heyn admits. “They allow us to see things that we couldn't see before and follow the growth without previous hypotheses: how a cell divides and starts doing different things in each division.” However, “that is only a small part of the possibilities it offers.” Heyn refers to the possibility of drawing up an entire human atlas and its possible applications in medicine.

Axolotl, the amphibian that intrigued Cortázar and is capable of self-regeneration / Research Institute of Molecular Pathology

A cellular atlas that is a periodic table

Eric Lander explains it as follows: “If we had a periodic table of cells, we would be able to find out the composition of any sample.” That theoretical periodic table that once revolutionized chemistry has adopted another image, that of a cellular atlas, and has given rise to a project that gathers the idea: the “Human Cell Atlas”.

Its aim is to identify each cell in the body, where it is located and how it acts together with the rest to form organs and tissues. Something like a cell Google Maps that serves as a reference so that “we can then place the houses and buildings on top,” as visualized by Heyn, who has no doubt that it will be something that “will change the rules of the game, as the Genome Project did in its day.” The next meeting of the initiative will take place in October, in Barcelona.

Although it is a voluntary consortium with no specific funding, it has had such popular sponsors as Mark Zuckerberg, the founder of Facebook, who “drove its inception and collaborates by co-financing specific studies.”

According to experts, the Human Cell Atlas will change the rules of the game, just as the Genome Project did in its day

Heyn's group is involved in two ways: it is responsible for the quality control of the project and is in charge of studying all types of B lymphocytes - the cells that make antibodies - that exist in the human body. “We want to see how they develop and activate in each place, how they work and how they change as they travel through the body.”

Previously, it was thought that there were 500 different cell types; now it is said that there are at least ten times as many. “But the numbers dance a lot, and they're probably even higher,” Heyn acknowledges. “The key is to think that the cells are incredibly plastic, that there's much more variety than we could have studied before.

In just two years of life, the project has already produced advances: it has served to identify a new type of neurons, which they have called ‘rosehip’ and which, for the time being, seem exclusive to humans; it has made it possible to establish a map of the cells the placental barrier and discover those that modulate the response of the defences and prevent their rejection; they have even found a new type of lung cell that seems to be involved in cystic fibrosis, a potentially fatal hereditary disease.

Once the function of a cell has been defined, when that function fails in the organism we will know who is responsible and what cell needs to be studied. The LifeTime project proposes focusing this type of technique on the study of the disease. The initiative aims to achieve - and has reached the final phase of evaluation - a funding of 1,000 million Euros from the European Commission as a Flagship project (as were the Graphene Project or the Human Brain Project).

One of the diseases where the new tools will be most talked about is cancer. If these techniques make sense “where there is heterogeneity,” as Heyn points out, cancer is the perfect candidate.

The German researcher Holger Heyn is responsible for the Single Cell Genomics team at the CNAG. / CNAG

In sickness and in health

A tumour is, in essence, an evolutionary machine. It accumulates changes and mutations in an unbridled way. But the changes can be different in one cell or another. Some can lead to metastases; others are able to resist treatments and regenerate the tumour and those beyond simply grow without apparent control. If healthy cells essentially share the same DNA, tumour cells can be very distant cousins.

The heterogeneity and evolutionary capacity of cancer are one of the great challenges of medicine and, surely, the great obstacle of the new precision medicine. The fact that some cells acquire new key mutations - or that a few are capable of resisting the chosen treatment - means that the efficacy of the therapies is generally only temporary. Cell-by-cell analysis techniques can be used to gain a better understanding of the biology of cancer and thus overcome some of these obstacles.

The analysis has already led to a possible treatment to prevent retinoblastoma, a hereditary cancer

“In the past, we had to deduce that evolution, now we can directly see the tree it builds,” Heyn explains. The applications - although incipient and not without difficulties - are remarkable. For example: major precision medicine projects are based on giving treatments if they find a certain mutation in the tumour, but they do not take into account the amount of cells that contain it and, above all, they cannot determine what type of cells they are and what their function is. Thus, it is not only more difficult to predict their efficacy, but also to prevent relapses of the disease.

Another example: the type of cells that give rise to many tumours is not known. In the case of retinoblastoma, a hereditary cancer, this analysis has identified the small population of cells in the retina that initiates it. By isolating them and studying their metabolism, researchers have proposed a treatment to prevent it. “Since the effects occur only in these cells, we couldn't see them when we analysed the entire tissue of the eye,” they explain.

Why we are the way we are

The powerful software of these analyses will also contribute to the development of the liquid biopsy, the possibility of detecting or following the evolution of a tumour through its trace in the blood. And the technology is already being used to study in the response of our defences and what specific type of cells act in the promising immunotherapy against cancer. Knowing them is a key step towards improving it.

“We can see that which we didn’t even know existed,” claims Heyn

“Other diseases that can benefit from these techniques are autoimmune diseases,” Heyn states, “because we still don't know what kind of cells produce the attacks.” These include inflammatory diseases such as Crohn's disease, lupus or multiple sclerosis. “And it will also serve to know, in the case of Alzheimer’s, what type of cells die at each stage.”

The visit ends with an enthusiastic statement in which, however, it is difficult to find any affectation: “These techniques allow us to see what we didn't even know existed,” Heyn says. “They're going to help us study the complexity of life, to know how we're built. And once we have an atlas, we will be able to compare it with that which fails, in us and between us.”

Were or weren't the blocks in the initial room exciting?

The Spanish researcher Esteban Moro leads the Atlas of Inequality project, an interactive map that makes it possible to check the different levels of segregation in cities

So far, the tool used to find out in which areas the rich, the poor or the middle classes live has been the official census, that is, where we live. “But it's a limited system because we spend most of the day outside our neighbourhood,” Esteban Moro, an MIT Media Lab researcher and professor in the department of Mathematics at the Universidad Carlos III de Madrid (UC3M), has told SINC.

Moro is currently leading a project called the Atlas of Inequality, which aims to go one step further and see how segregation extends to the places we visit every day in our city. The map is drawn from mobile geolocation data of people with different income levels.

The project, the researcher explains, “is part of a broader initiative to understand human behaviour in cities and how large-scale problems such as transport, housing, segregation or inequality depend, to some extent, on the patterns that emerge from our decisions or opportunities.”

It is a line of research -he adds- “that we have been developing in the Human Dynamics group of the MIT Media Lab and of my department of the UC3M for a long time.”

Esteban Moro, at the Carlos III University in Madrid / Álvaro Muñoz Guzmán / SINC

Although it is expected to extend to a dozen U.S. cities, the starting point of the atlas has been the Boston metropolitan area, which, according to the latest census, has about 4.5 million inhabitants.

Coloured dots that warn about inequality

The starting point of the atlas has been the Boston metropolitan area, which has 4.5 million inhabitants and a great deal of segregation

The interactive map shows a multitude of coloured dots indicating levels of inequality, ranging from red for the most segregated spots to blue for the most diverse. According to Moro, “the map provides a snapshot of the homogeneity or diversity of income among the people who visit thousands of local destinations every day.”

Income inequality and segregation “have traditionally been analysed in terms of the neighbourhoods in which people live. Here, the focus has been on identifying where people with different incomes meet, where they happen to be - or not to be - as they move around the city to work, eat, shop or go to museums, cinemas, theatres and parks,” he insists.

According to the data handled by the authors, 75 % of the people we meet live very far from us. “If we are segregated, it is because we want to, not because of where we live,” Moro points out. “In our atlas, what we observe is what people really do during the day. It allows us to see how different income groups come together.”

Boston Inequality Atlas. Multitude of points of colors indicate the levels of inequality, that go from the red one for the most segregated places to the blue one for the opposite. / MIT MediaLab

To develop the Atlas of Inequality, researchers analysed the mobility patterns of about 150,000 anonymous users (about 3% of the Boston metropolitan area population) between October 2016 and March 2017.

The information was obtained through a cooperation with the Data for Good de Cuebiq initiative, which collects geolocation data from mobile phones and tablets using applications that need the appropriate location to offer their services, such as weather apps. This organization then provides this data anonymously and in an aggregated form for research purposes.

The team has used geolocation data in order to see where people of different incomes meet (or not) as they move around the city to work, shopping or during leisure time

The income range of the users was determined by the place of residence, which is deducted by the place where they spend their nights most frequently. In addition to the Foursquare app, researchers extracted the 35,000 local places visited by people, including outdoor public spaces, restaurants, shops, museums, residential areas and hospitals.

All this information, aggregated and anonymised, was then treated with massive data analysis techniques, machine learning and algorithms developed by the researchers in order to extract how many people from different economic groups go to the places analysed.

Segregation from one sidewalk to the other

In this first phase of the Atlas of Inequality “we have used massive data on how people move around the city. What we have also shown is that inequality or segregation happens not only between neighbourhoods, but even at the street level. Choosing one place or another to have a cup of coffee is also a way to foster segregation among ourselves,” remarks Esteban Moro.

He comments that in the study they have found very diverse places next to others with strong segregation. He gives the example of two cafeterias that can be found on the interactive map and that are almost opposite each other. One of them (a local site) is only attended by people with few resources and the other (owned by a famous chain) has people with all kinds of income as customers. “That those places are so close to each other means that what we decide to do influences whether we find people from one group or another. It's our choice.”

Image of two cafeterias on a Boston street that are 200 meters apart and have a very different levels of inequality. / MIT Media Lab

Another interesting discovery they have made is that Asian restaurants have less segregation than Latin American restaurants in Boston. “In Latin restaurants -except for Mexicans- there are usually people from a certain economic group. In a Japanese restaurant, however, you will find people of different purchasing power levels.”

“We have shown that segregation occurs not only between neighbourhoods, but even within a few metres in the same street,” says Moro

The researcher explains that for a visit to be counted, the user has to spend more than five minutes in one place. Clicking on a location reveals the relative proportion of each income group visiting that space, which is shown with a sign of one to four dollars, along with the classification of the income inequality of the place.

According to the free local newspaper Next City, in Boston's the Atlas of Inequality certain patterns are immediately obvious. The dense downtown areas are full of blue dots, indicating that commerce and government areas are visited by people of all income levels.

In much of the eastern part of the city, a lot of red and orange dots show that most businesses still lean toward low-income groups, even though the influx of luxury residential towers is changing an area that has a lot of immigrants.

Airports, hospitals and museums, the most diverse

Among the places with the greatest diversity are airports, where you find people of all kinds, and museums, particularly science museums, which are among the least segregated in the U.S.,” says Moro.

What the team has found is that, as in most major American cities, there is “high segregation in Boston.” A recent report by The Brookings Institution indicates that it is the seventh most unequal city in the country in terms of income. Another one points out that the city has added tens of thousands of low- and high-income households over 25 years, while losing middle-income residents.

What are the consequences of the growing separation of different economic groups in cities? Esteban Moro points out that “the fact that we are not exposed to people of different socio-economic conditions causes us to segregate and this has consequences, especially in the area of health.”

The Boston Science Museum is one of the least segregated places in the city. / MIT Media Lab

For example, he adds, “people who live in segregated and poor areas live less. There are also economic consequences and even consequences in innovation, because innovation is nourished by diversity. So the cities with the most inequality will be less innovative in the future,” he says.

In addition, “it has effects on our democracy. A series of studies warns that the fact that we live segregated can impact on the implementation of redistribution policies of wealth, taxes, social spending, etc.”

"People living in segregated and poor areas live less. There are economic consequences and even consequences in innovation, as this is nourished by diversity"

We are also responsible

Moro insists that we are also responsible for this inequality. “We decide where to go and we find ourselves more comfortable in places with people more like us. This has been studied. The Nobel Prize in Economics Thomas C. Schelling investigated this phenomenon, which has a great effect on the segregation of cities, as we have seen in our project.”

In the next phases of the atlas, the aim will be to create a dynamic map of places to see how city policies, changes in public transport or new urban developments can lead to more or less inequality in the places where encounters take place,” he points out.

What the Atlas of Inequality provides is, “first of all, a resolution that didn't exist before,” claims Moro. “The fact that we can investigate a particular block will make local interventions by the relevant agencies more effective. Secondly, the effect of these possible improvement actions to reduce segregation and increase diversity can be seen in real time. It’s a very powerful tool, not only because it allows you to discover things, but because you can know how to improve.”

This atlas is having an excellent reception “The good thing about making a platform like this is that people have immediately gone to check the places where they live and tell us stories of why they think a location is one way or another, and that information is very valuable to us.”

It has also had a very good institutional response. “For example, from town halls, institutions and landowners that are interested in us doing a particular study or consult us because they want to know how an area has changed after having made an intervention.”

Nueva York and Manhattan

The researchers have just uploaded the New York City Atlas of Inequality, whose data will now have to be analysed. At the outset, says Moro, “what is most striking is the number of blue dots that can be seen on the island of Manhattan, because the most diverse sites are concentrated in that area. Unlike the surrounding neighbourhoods, such as Queens, Brooklyn or New Jersey, where there are more red dots, that is, more segregation.”

The team just uploaded the New York City Inequality Atlas to the platform. The large number of blue dots on the island of Manhattan reveals that it is the most diverse area of the city. / MIT Media Lab

After the New York atlas, the team will continue with Seattle, San Francisco, Los Angeles, Miami, Washington, Philadelphia, Detroit and Chicago. Outside the U.S., Mexico City is to be included. “We chose this city because its census is very good and because the company we work with [Cuebiq] has a very good penetration there.”

"Just by changing 1% of our behaviour, we add 5% diversity to our lives and that's enriching"

Esteban Moro says that in Spain and Europe, until now, they had not considered doing anything similar, since the Data Protection Act “still does not clearly indicate what can and cannot be done. In the U.S. all this is more established,” he explains. However, the researcher has just received the news that it will be possible to prepare the Madrid Inequality Atlas.

Let's cross the street

To conclude, the researcher has a piece of advice to give us on how to achieve greater diversity in our daily lives with small steps: “Just by changing 1% of our behaviour, we add 5% diversity to our lives and that is enriching.”

Returning to the example of cafeterias opposite to each other, he encourages us to cross the sidewalk and make it possible to meet those we may not consider similar to us, but who can provide us with other points of view.

Updated on June, 12, 2019. After the publication of this report, the researcher learned that Madrid will also be one of the cities included in the Atlas of Inequality project.

Graphene is already on the market, but not, for the time being, with revolutionary applications. As Andre Geim, recipient of the Nobel Prize in Physics and ‘father’ of the material, would say, they are really “evolutionary”. The Zaragoza company GrapheneTech is a good example of this.

GrapheneTech was born in 2010, after Geim was awarded the Nobel Prize, and was the result of a cooperation with the CSIC and the Aragon Institute of Nanoscience. It all started with a reactor the size of a soda can, capable of generating about three grams of graphene a day. Today they manufacture one ton of this material and also develop products ranging from graphene-enriched polymers to biosensors. The Aragonese company is part of the large European flagship.

The technology of the Aragonese company GrapheneTech was shown at the Mobile World Congress in Barcelona. / Graphene Flagship

Less is more

These beginnings weren't easy. “We opted for the mechanical micro-exfoliation of graphene, a production system that no one entertained any hopes for at that time. They told us we were crazy,” recalls José Antonio Paláez, director of operations. But they succeeded: first 3 grams, then 300. Later, 1 kilogram.

“Once we were able to produce graphene, we realized that companies didn't know how to use it,” explains Paláez, an electronics engineer by training. At first, companies and producers made the mistake of thinking that the more graphene they added, the better the results. “We realized that with graphene, less is more.”

“We collaborated with the Spanish ski team and developed a wax to make them slide better on the slopes”, says Peláez. “They went down the slopes like speeding bullets!”

It took them some unpleasant surprises to come to this conclusion. “Since graphene is a good lubricant, we collaborated with the Spanish ski team and developed a wax to make them slide better on the slopes,” says Peláez. “We added very high percentages and the times improved... but too much, they went down the slopes like speeding bullets!”

GrapheneTech's initial idea was to be a large-scale producer and supplier of graphene, but they realized they would help their customers more if they also developed final applications. “We looked at which applications were most immediate for the market, even if they weren't pretty.”

Today they produce graphene powder as a raw material, but also products that use it. These can be grouped into three families, according to their application: energy storage (batteries and super-capacitors); addition of polymers, lubricants and greases; and coatings and inks with conductive or thermal properties.

‘Doped’ polymers with graphene

The percentage of carbon, number of layers and specific area determine the properties of graphene and, therefore, its applications. GrapheneTech takes some of the most commonly used polymers, such as polyethylene, polystyrene and PET, and adds graphene powder to them in order to improve their properties. The list of applications ranges from the aerospace and automotive industry to 3D printing.

Paláez insists on the “less is more” philosophy they learned with the skiers. For example, to improve the mechanical properties of the polymers by 45%, it is enough to add between 0.5 and 1% of graphene. In total, they produce about 5 tonnes of these enriched compounds per day.

Another option is to provide these polymers with electrical conductivity or to make them heat dissipative. In this case, 10% graphene is added. But you can't have everything in life: then the mechanical properties decline.

Avanzare is a company in the Rioja region that, along with GrapheneTech and Graphenea, is part of the national ‘trident’ of graphene production and application development. Its CEO, Julio Gómez, notes that, as of today, the main massive “profitable” use lies in these composite materials, “mainly resin with fibre,” which are used in markets such as aeronautics, vehicle transport, wind turbines and the chemical industry

Graphene ink for printed circuits of GrapheneTech / Graphene Flagship

Flexible electronics

Gómez explains that there are more interesting applications at present: paints, conductive inks and, above all, textiles. “Graphene is going to be crucial in the development of intelligent fabrics and micro-sensors.” He also mentions “very niche” applications in sports, such as sneakers, which “use a minimum amount” and represent “2%” of the total. “A single composite application is equivalent to all tennis rackets made with graphene for five years,” he adds.

The have created a jacket for runners whose sleeve has seven sensors printed that allow Bluetooth control of mobile music and the answering of calls

GrapheneTech also develops conductive inks. These contain small percentages of graphene and can be used for screen printing, rotogravure, labelling and offset printing. “Their use is focused on flexible electronics,” Paláez says. For example, biosensors that determine protein types, blood glucose and other markers. “Diabetics use disposable labels, and the carbon part where the blood drop is placed is the graphene ink that is used now.”

The company is currently working with several companies to apply these conductive inks on wearables. Paláez gives a couple of examples, such as a sportswear whose temperature can be controlled with an app: “We have printed resistances in the lumbar part so that it reaches between 30 and 65ºC.” Also a jacket for runners whose sleeve has seven sensors printed that allow Bluetooth control of mobile music and the answering of calls.

Similarly, they are working with a Korean company to develop a flexible lithium-ion battery. “It's been a year and we already have the first button batteries, with a 50% improvement in capacity and a 35% improvement in durability. The idea is to manage to create one that is like that of a smartphone.”

Graphene can be used in wearable technologies, such as this ICFO patch. / Graphene Flagship

Marketing vs. secrecy

“For many of the companies we work with, graphene is not a marketing issue,” says Paláez. “It seems that, when a product is launched on the market, it has to make noise and everyone has to see that it is being used, but for these companies, graphene as a marketing tool isn’t going to make them sell more.”

In fact, the engineer finds that the companies prefer not to reveal the secret. “When it gives competitive results and you can hit the market, companies do not want to disclose that their product carries graphene, they keep the ace up their sleeves.”

“When it gives competitive results, companies do not want to disclose that their product carries graphene, they keep the ace up their sleeves”, says Peláez

Gómez believes that the difference between a marketing application and a mass application is that the latter will never specify the use of graphene: “Putting graphene on the label is marketing. If your tennis racket is so good because it has graphene, why are you going to advertise it? Composite material is not sold because it has graphene, but because it's better than that which doesn't contain graphene.”

Many of the products developed are for internal business use. Paláez quotes a paint company that transports chemical substances: “They have to paint the containers every two fillings because they are very aggressive compounds. We have developed a graphene paint that is better at withstanding corrosion and for them it is more than satisfactory, but they don't market it.”

The situation has attracted attention because it is the opposite of the marketing that usually surrounds this material. “We have come across some fraudulent competition that has done us a lot of harm. They have used the graphene appeal to sell more. We know they don’t use it, which is why they’re not part of the Graphene Flagship initiative.”

Neither mattresses nor dentures

According to Paláez, graphene mattresses are “the biggest scam in history.” He notes that they investigated the subject and the results obtained “were worthless.” The explanation is that, by injecting the material into expanding foam, the percentage is greatly reduced, when the target is for the sheets to interact with one another. “We looked for evidence of heat dissipation but the results were the same as without it,” he says.

“We have come across some fraudulent competition that has done us a lot of harm. They have used the graphene appeal to sell more”

Something similar happens with paints and teeth, which share the same problem. “Graphene powder is completely black,” says Peláez. “A lubricant with 0.05% graphene is already completely black.” This is a problem in products that, especially in the case of teeth, must be white. “Dental prostheses break after three months because the additivation is with calcium carbonate.”

“It's interesting to say that a product contains graphene because this helps to sell it,” says Peláez in relation to these companies that sometimes don't even use the material. “Others use it and keep quiet because it is a strategic product that differentiates them from the competition.”

Paláez says that this year they have taken several of their products to the Mobile World Congress in Barcelona, and that people were surprised that they were being marketed. “They are waiting for the lift to the Moon, which is crazy, and developments such as the new generation of processors and transistors. That's going to take a while,” he says. “There have been announcements that nobody believed; graphene, like any material, needs its time, but industrial applications are beginning to be seen,” adds Gómez.

The Sinc agency participates in the SCOPE European project coordinated by FECYT and financed by the European Union through Horizon 2020. The objectives of SCOPE are to communicate visionary research results from projects associated with the Graphene Flagship and the Human Brain Project, as well as to promote and strengthen relations within the scientific community of the Future and Emerging Technologies Emblematic Research Initiatives (FET Flagships) in the EU.

That story is probably a legend, but what is certain is that thousands of workers cooperated from below so that Neil Armstrong could step on the lunar surface that legendary July 20, 1969. Among those people are several ‘jarandos’, as the inhabitants of the Madrid town of Fresnedillas de la Oliva are known.

In the 1960s, NASA arrived in this small agricultural and cattle-breeding village to install one of the huge antennas of the Apollo program.

At that time it was a small agricultural and cattle-breeding village, with a population of little more than 400, and where four years earlier NASA had arrived to install one of the three monitoring stations of the manned flights of the Apollo program. The other two were located in California (USA) and Canberra (Australia) so as not to lose the signal at any time.

The first sentence of a human being when arriving at the Moon was not the well-known “That’s one small step for a man, one giant leap for mankind,” but that also said by astronaut Neil Armstrong a few hours before, when the ship landed: "Houston, Tranquillity Base here. The Eagle has landed”. The first place on Earth where those words were heard was the Fresnedillas station.

Among the orchards and the farms where cows and goats were raised, a large antenna, with a 26-metre diameter, was built, as were the buildings where more than one hundred technicians and engineers managed communications between the spacecraft and Houston. A few jarandos were also at work in those modern facilities, mostly in maintenance and service tasks.

A 22-hour day

“Coffee, lots of coffee and more coffee; the Americans drank lots of coffee, especially at night,” recalls Consuelo Alonso, one of the town's residents, who worked as a waitress at the station between 1967 and 1970. During that historic day she worked, like most of the staff, 22 hours in a row.

“The Americans were nice, very smart, very professional, and very polite,” says Consuelo. “They had lunch early, between 11:30 and 1:00 p.m., and it was a good lunch, by the way; one of them used to eat seven eggs with ham and cheese. There was room for about fifty people in the dining room,” she continues. “There was a counter with buttons to keep the food warm, a potato peeler, and a large sink for washing the pots and pans. Everything was very well organized.”

Kitchen of the old Fresnedillas station, where Consuelo Alonso worked. / Photo courtesy of the former employee

Consuelo tells Sinc that she heard that the lands on which they built the station were “very well paid.” They were actually located in the municipality of Navalagamella, but the owners of the plots were from Fresnedillas. This generated more than one conflict between the two town halls when it came to claiming the fame for their participation in the lunar feat. In the end, so as not to argue, NASA decided to call it the Madrid Space Station.

“Part of my grandfather’s orchard, which was his livelihood, was expropriated from him; and my father, who was the mayor at the time, had to fight hard to defend Fresnedillas and to provide everything necessary for its inhabitants to have a place in the base,” says his daughter, María Nieves de la Peña, who also was hired at the age of 17 to work in the cafeteria at the station.

“Part of my grandfather’s orchard, which was his livelihood, was expropriated from him; and my father, who was the mayor at the time, had to fight hard to defend Fresnedillas.”

“They picked me up in a car pool, which was a shared car where several employees travelled,” she recalls. “Then I would serve coffee all morning in the coffee shop, where the technicians would come before starting work. They had their homes in Madrid. We communicated with each other a little bit in English and also in Spanish, because some were Hispanic. As an anecdote, I can tell you that in their free time they played volleyball under the antenna. I could see them behind the windows.”

When Armstrong stepped on the Moon, Maria Nieves was at the station's communications centre: “I didn't understand, but seeing everyone jump for joy, I assumed that everything had worked well. Then we saw the images on the TV that my parents put in the window. When the connection ended, people went to celebrate in the village, just as we Spaniards do. Americans would organize more formal and boring parties at the Escorial.”

The Apollo couples

“My experience with the people at the base was very good," she continues. “They were very good to me. I felt very sorry I couldn't go on, but I married a technician, the head of general services for the power plant. They convinced me that if I was going to have children, it would be better if I stopped working and stayed at home. That's the way things used to be. The golden brooch they gave me when I left the station was used to make the wedding rings.”

"The golden brooch they gave me when I left the station was used to make the wedding rings,” recalls a former employee

This is not the only example of couples who met at the base. Manuel Basallote, a carpenter from Cádiz, also married a resident of Fresnedillas and stayed here: “I went from building wooden boats in Barbate to workbenches, consoles and computer tables on the space station. I was in it for 18 years and when it was closed in 1985 I moved, like much of the staff, to that in Robledo de Chavela.”

“In the beginning I was involved in the construction of the buildings and the base for the large antenna,” says Basallote. “I had to get used to American tools I had never seen before, like a drawer with a circular saw. I was later more involved with maintenance work, with a lot of partitioning and wall changes with plasterboard.”

“I had several accidents,” he says sadly. “One of them happened when I was travelling with the motorcycle along the road that connects the village with the station. My helmet broke and I smashed my face. Later, making a package for the cone of an antenna they were going to send to Australia, I was working with a 12-drill bit, lost control of it and it broke my elbow bone. I took eleven months off work but was never without my salary, 100% of it.”

On the left, a page from the Pueblo newspaper of the Franco dictatorship. On the right, Iberian Daily Sun. Both the national and international press echoed the feat experienced in Fresnedillas in July 1969. These and other clippings are exhibited in the town's Lunar Museum. / SINC

Another resident of Fresnedillas who started as a carpenter and worked in the maintenance of the facilities was Rogelio González, who comments that, although the salary was a little better than outside the base, he still had to combine it with other tasks: “Every day I was going to look after the cows and, in addition, I distributed animal food in this area in the afternoons and evenings.”

Scenes from the film The Astronaut, starring Tony Leblanc, were shot at the Fresnedillas station

Bernardino Herrero was likewise an owner of cows, in his case dairy cows. Although he held several different positions, he ended up as the station’s gardener. “We managed to have a very handsome garden of about 4,000 m2. We planted different plant types, we made window boxes, walks, lots of shelves... The machines and the conditions we had here were much better than in the country.”

“The town was totally lost at the time the Americans arrived, but thanks to them things boomed. More than twenty families depended on the base. Spain has never since had a company like NASA-INTA. Then the Spaniards were left alone and it was different: I have never kept quiet about the injustices or frauds I saw,” Herrero says.

The list of Fresnedillas inhabitants who worked at the base and are still alive is diminishing every year, but among them are its former guard, Sebastián Gómez, the bricklayer José Rodríguez Botello, the cook Vicente Hernández de Castillo - famous for preparing very large paellas -, and the loquacious Pedro Zurita, who held various positions and enjoyed talking to everyone: “At the station I got to chat with the crew of the Tony Leblanc film The Astronaut, made in 1970. Some of its scenes were shot here.”

Jarando technicians

In addition to maintenance and catering employees, some jarandos had access to technical positions. One of them was Luis Rodriguez, who joined in at the age of 17 as an electrical assistant, but was trained - in English - at the American Torrejón Air Base and obtained his degree as an antenna mechanic to work in his town's station.

“It's hard work," he says, “because antennas are big and dangerous. You have to work at height of 40 or 50 metres. We didn't succeed in getting paid a hazard bonus. More than once I had to stay overnight or leave my home to track satellites or ships, like the Skylab station.”

Workers working on the antenna and diploma given by NASA to Luis Rodriguez for his participation in the Apollo XI mission. / 40th Anniversary Publication

“In any case, I have good memories of my time at the station,” Luis adds. “The night the man arrived on the Moon was one of fear. People screamed and cried. I was going in and out to listen to Jesús Hermida’s broadcast from the United States on a car radio.”

For his part, José López was in charge of the electric power that reached the antennas. This head of the electromechanical team came from General Motors, so passing the tests in English and adapting to the American generators, which operate at 60 hertz and 110 volts instead of 50 Hz and 220 V as in Spain, was no problem for him.

"Without the vital communications between the Apollo XI and the Madrid station, our Moon landing would not have been possible,” Armstrong said

“I have been working on this for 40 years and I could tell you many anecdotes and conflicts, such as the generator that arrived wet in Cadiz in the hold of a ship. I had to dismantle the whole thing to eliminate the salt water,” José remembers. “I have lost my nails from so much tightening screws and my health is precarious. There were no gloves before for working with batteries.”

“It's been a sacrifice,” he adds. “One of my children was born in Murcia while I was here, keeping an eye on the Apollo XI mission. I missed many family parties or seasons without being able to go out with my wife. It hasn't been a bed of roses.”

But the work of Jose and the rest of the employees at the Fresnedillas base, from the waitresses who served the coffee to those who took care of its facilities and operated the equipment, had its reward: helping to fulfil a dream of mankind.

Three months after stepping on moon´s soil, Armstrong and his colleagues visited Spain. During the reception offered by the U.S. Embassy, the astronaut stressed: "Without the vital communications between the Apollo XI and the Madrid station, our Moon landing would not have been possible.”

Electromechanical technician José López shows the equipment to Otto Womick (with sunglasses), the first American manager of the Fresnedillas Station. / 40th Anniversary Publication

And what did the Apollo programme give Fresnedillas? Without a doubt, it was a revolution in a rural environment sustained by agricultural and livestock activity. But that's not all. Olivia Ventura, an agricultural engineer and town councillor, talks about the intangible heritage that that NASA station left in the village. “Our grandparents at the time couldn't appreciate the scope of what was happening because they were focused on doing their job, but the next generations have grown up hearing the stories about the antenna and the Moon. It's no coincidence that a few of the grandchildren eventually became engineers.”

Now, the small village lunar museum and the Fresnedillas de la Oliva Town Hall are organizing a multitude of events to commemorate the half-century of man's arrival on the Moon in 2019, with astronomical observations, photographic exhibitions, lectures and gastronomic activities.

Among the participants in the organization are two jarandos that continue the space tradition: engineer Tomás Alonso, who works at the Robledo station managing the signals sent by NASA deep space missions; and physicist Juan Cabrero, who from the Instituto Nacional de Técnica Aeroespacial (INTA) cooperates in the manufacture of one of the instruments that will carry the European Space Agency's ExoMars mission to seek life on Mars.

For the time being, Cabrero must continue to explain in his talks that we did reach the Moon. His neighbours, who experienced it, know that it is true.

The Lunar Museum of Fresnedillas de la Oliva

“Houston, Tranquillity Base here. The Eagle has landed.” Those first words from Armstrong received from the Fresnedillas station are remembered on a panel at the entrance to the town's Lunar Museum, “inaugurated in 2009 on the occasion of the 40th anniversary and now awaiting transfer to a new headquarters,” says its manager, Elena Hernandez.

Inside you can find a collection of 300 objects related to space missions: astronaut suits (including those of Pedro Duque and Miguel López Alegría), a showcase dedicated to the visionary Emilio Herrera, the original flight plan of the Apollo XI mission, a model of the Saturn V rocket made with Lego bricks, a Spanish flag that was on the Moon, machines from the former Fresnedillas station, commemorative medals, etc.

Among the donors of these pieces are Jordi Gasull, producer and scriptwriter of the film Atrapa la Bandera (Catch the Flag), and engineer José Manuel Grandela, one of the technicians who entered the Fresnedillas station to participate in all manned flights to the Moon.

With regard to the large 26-metre antenna where the first human signal arrived from the Moon, in 1985 it was transferred from Fresnedillas station to Robledo de Chavela station, where it was operational until 2008 and is now preserved as a huge museum piece, visible from the road.

The project has already successfully tested robots inspired by ants and bees and plans to do the same with other insects. But how can we translate something as complex as a brain, however small, into algorithms that move a machine? “The bridge between the biological and the artificial is mathematics,” Paul Graham, a researcher at the University of Sussex (UK) and a member of the Brains on Board team, has explained to Sinc.

The million neurons of bees allows these insects to orient themselves for miles in a three-dimensional space and return to their hives

The attractiveness of this type of brain lies in its efficiency. “The interesting thing about the brain of bees is that despite being small, with a million neurons, it enables flexible and robust behaviours,” says Graham. “Their performance is far above that of today's artificial systems, so we think they are a good inspiration for biomimetics.”

The million neurons of bees may seem irrelevant compared to the billions that human brains have, but they allow these insects to orient themselves for miles in a three-dimensional space and return to their hives. They can also optimize their routes, perform multitasking, and quickly adapt to new scenarios and learn from them.

Bee Bot, simple and efficient

To develop such robots, computational biologists and neuroscientists have to create models that capture the essential details of the living organism. Our understanding of how brain and behaviour relate is “much more advanced” in insects than in mammals, but that does not mean the ‘translation’ is simple.

“The key is to simplify with an adequate level of detail that maintains the fundamental components of the original,” claims Graham. “For example, we can use general models of neurons or that represent groups of these cells, rather than dealing with the morphology and complexity of each individual neuron.”

The project’s intention is to create small machines, with simple sensors, so that they can operate for hours without the battery being a problem

The result of this “simplification” are algorithms, albeit digestible by a machine. Bees can learn and navigate complex terrain while analysing the distribution of their resources and making optimal decisions about where and when to look for food. A bee robot should be no less than that.

“We're looking for simple robots that can work in environments where GPS doesn't work,” explains Graham. The project’s intention is to create small machines, with simple sensors that don't require much computing effort, so that they can operate “for hours” without the battery being a problem. As efficient and flexible “as a bee looking for food.”

The researcher lists the situations in which such a machine would be useful. For example, in search and rescue tasks in a catastrophic area, space exploration or monitoring in mines and agricultural fields.

Ants and dragonflies

Graham says other species could be used as inspiration to make robots with different specializations. “Insects have a similar brain organization,” he comments. In fact, Brains on Board researchers have already made automatons inspired by ants, “which are related to bees and have similar brains.”

Dragonflies could result in robots capable of carrying out extremely precise aerial manoeuvres

“The differences [in brains] depend on the ecological needs of the insect. Organs and algorithms would be similar, but tuned for different behaviours,” says the neuroethologist. Graham gives as an example the case of dragonflies, which could result in robots capable of carrying out “extremely precise” aerial manoeuvres. In fact, he says Brains on Board plans to collaborate with other groups in Australia to model the brains of other insects.

This type of work also represents a reciprocal exchange between areas. According to Graham and colleagues, the combined study of brains and algorithms “not only benefits robotics, but also biology. In this sense, mathematics can help to better understand how an organism works.”

The 'Brains on Board' project is the result of the collaboration of several teams from the universities of Sheffield, Sussex and Queen Mary and is funded by the Engineering and Physical Sciences Research Council (all of them in the United Kingdom). They also cooperate with HBP, as the technology developed “is scalable, accessible and of great interest to many of their teams.”

The Sinc agency participates in the SCOPE European project coordinated by FECYT and financed by the European Union through Horizon 2020. The objectives of SCOPE are to communicate visionary research results from projects associated with the Graphene Flagship and the Human Brain Project, as well as to promote and strengthen relations within the scientific community of the Future and Emerging Technologies Emblematic Research Initiatives (FET Flagships) in the EU.

In collaboration with David Ríos, professor at the Institute of Mathematical Sciences (ICMAT) and scientific director of this company, they created the first model: Aisoy 1, which the firm called “the first emotional robot for the consumer market.”

In Aisoy Robotics had not considered the use of their robots in therapies for children with autism until the success they had with Juan

These small robots, measuring an approximate 22 centimetres in height, are now on their sixth generation. Their latest versions are Aisoy KIK and Aisoy EMO. “They’re based on Raspberry Pi 3,are easily programmable with Scratch and have sensors and actuators all over their bodies, thanks to which they can compile information on their surroundings and act on them,” says Ríos to Sinc.

As Ríos explains, “they’ve been designed to display emotions that manifest in gestures and different tones of voice and they can show happiness, sadness and even humour. Moreover, they can speak and understand English, French and Catalan as well as store experience in their memories to respond in a manner similar to that of a person.”

As Ríos explains, "they have been designed to display emotions that manifest in gestures and different tones of voice, and are capable of showing joy, sadness and even humor. In addition, they speak and understand English, French and Catalan, and can store experiences in their memory to respond in a similar way as a person would".

The robots of Aisoy Robotics, whose prices range from 300 and 400 Euros, are now already being used as a support tool in more than one hundred educational centres in Spain and other countries. Some 2,000 units have been sold worldwide in the last few years, according to the company.

José Manuel del Río points out that, at first, they had not considered the idea that their robots could be used in therapies for children with autism “due to a sheer lack of knowledge.” However, in 2015 “several things that happened made us think of their possible use in this area,” he stresses.

That year, a study was published on the use of various robot models, including Aisoy 1 version 4, as a tool to help develop social skills in children with autism spectrum disorder (ASD). The first signatory of the work was the Spaniard Jordi Albó-Canals, an expert in artificial intelligence and social robotics who currently works between Boston and Spain and is a research associate at MIT and Tufts University.

Lisa Armstrong and her son Juan / Courtesy of Lisa Armstrong

Lisa and Juan

Among those who read that article was Lisa Armstrong, a nurse living in Humboldt (a small town in Kansas) and the mother of an autistic child, who was desperately in search of tools that could help her communicate with her son.

“At the time –Armstrong has told Sinc by email– Juan was 11, and I was on the brink of despair. Neither private therapy nor the limited means of support of the school he went to were of much help to him. His behaviour was getting worse every day until he became aggressive.”

Lisa Armstrong read an article mentioning the potential of Aisoy 1 for helping children with ASD and bought one of those robots

Armstrong had read other studies that dealt with the benefits of using social robots in therapies for children with ASD. “But many of the robots mentioned were not available for families and the few that were could only be purchased at a price I certainly couldn’t afford,” she explains.

At the time, the only robot available in the market for people not involved in scientific research was NAO, from the Japanese firm SoftBank Robotics, which cost more than 10,000 dollars (about 9,000 euros).

However, Aisoy 1, from the Alicante-based company, did have a price she could afford. She bought it online on an offer for some 300 dollars (265 Euros) and programmed it herself.

“It was quite an adventure to learn to programme the robot because I had no experience in either programming or robotics. But thanks to José Manuel del Río and his team, I found the information and tools needed to start to write simple programmes, using Scratch with pre-programmed code blocks, with which you can drag and release the blocks that control the robots in whatever order you want.”

This is how she got to write her first routine, which she called Good talking Juan. Armstrong remembers with excitement what she felt when she heard her son repeat the word “hello” for the first time. By means of the different individualized programmes, she has been creating with the help of the Aisoy Robotics team, especially its technology director, Pablo García, the child has acquired a vocabulary and learned to use words in certain situations.

“Juan is mainly non-verbal, but by using the robot he has learned to repeat certain keywords and shows that he knows their meaning. Besides, the robot has helped my son subdue his reactions to excessive stimuli and to emotions that overwhelm him. His tantrums before could last hours and now, with the support of a ‘calming’ programme of the robot, he manages to calm down after five minutes,” she points out.

She herself learned to program the robot with a series of routines that helped Juan communicate and say his first words.

Also, with the help of the android, she has also succeeded in teaching Juan basic notions of mathematics and social norms. But what matters most, as she remarks, is having managed to communicate with him. “It’s not my voice he pays attention to, but the robots. However, the content is mine and I see Aisoy 1 as an interpreter with which I can talk to my son,” says Armstrong.

Juan is now 14 and his mother is in charge of his education at home following a customised programme that was specifically created for him by the therapists. “Fortunately, the management of the hospital where I work allows me to do shifts that are compatible with my family life,” she says.

Lisa Armstrong developed so close a relationship with the Aisoy Robotics team that the nurse has now become the distributor of the Spanish company’s robots in the United States, according to José Manuel del Río.

Therapy support tools

“Lisa’s experience with our robots and a few other occasional cases have encouraged us to enter the area of therapies for children with autism, in collaboration with experts from the Miguel Hernández University Hospital”, José Manuel del Río comments.

But these isolated cases are not statistically significant, which is why, in his words, “we have commissioned the design of a clinical trial to check the effectiveness of Aisoy EMO and KIK as useful tools in these therapies.”

Albó-Canals has been chosen by Aisoy Robotics to design this trial, in collaboration with researchers from Tufts University and the Federico Santa María Technical University (Chile).

As the MIT expert has explained to Sinc, this pilot study will explore the viability of using Aisoy robots “as an attractive platform for positively impacting on the social and emotional development of children with ASD.”

The company has commissioned the design of a clinical trial to check the effectiveness of its robots with 50 children

If funding is secured, the trial will take place in Spain in the homes of 50 children with autism. "The aim is to use the robot as an enabler that creates interest and curiosity in the participant to communicate with family and friends.

The advantages of this technology, according to Albó-Canals, “lie in the fact that there are already positive experiences in some cases of children with autism and that it’s a platform with an affordable price. Moreover, they can be easily programmed with Scratch”.

Also, he adds, “there is much talk of using robots that imitate human appearance for such therapies, but in my opinion, the size of Aisoy automata is very interesting because they can serve as desktop robots that can adapt to spaces designed for people. And their appearance, which is a combination between that of machines, animal and animated cartoon characters, places them in a very good position of acceptance.”

The complexity of human communication

Therapies using robots for children with autism “were begun two decades ago,” Luis M. Martínez, a researcher at the Alicante Neuroscience Institute, explains to Sinc. “Children with this disorder see, hear and feel the world in a different way, which affects the manner in which they interact with others. Human communication is of great complexity and involves the look in one’s eyes, one’s gestures, tones of voice, which can convey happiness, sadness, sarcasm… and this is a great challenge for children with ASD.”

Child and therapist in a session with an Aisoy robot / Aisoy Robotics

Social robots –says Martínez– “manage to interact with these children in a simpler way. They simplify the whole process and the objective is achieved because they don’t feel overwhelmed by an avalanche of information and therefore feel more comfortable.”

What matters in such therapies, he adds, “is that both family members and therapists become involved and that there should not only be communication with the robot, because if so, the transfer doesn’t take place and the isolation continues.”

One of the problems so far lay in access to these robots by the families. This is why, for Martínez, “Aisoy’s accessible, simple technology is very interesting, as is the approach of the study because it’s going to be carried out in the family household rather than a doctor’s office or laboratory.”

Social Skills

So far, one of the few scientific studies with social robots in the homes of children with ASD has been done by a group of researchers of Yale University, led by Brian Scassellati, a professor of Computer Science and Cognitive Sciences at this American institution.

“In order to carry out our study, we need financing. Our company is a small one and we can’t do so on our own,” says the founder of Aisoy Robotics

Scassellati’s team tried out autonomous robots in therapies with twelve children, in which caregivers and family members also participated half an hour a day for a month. The results were published in Science Robotics magazine in August last year.

“The robots were designed to guide children through a series of social skill games with programming that adapts to the strengths and weaknesses of each one of them, changing the difficulty of the tasks in order to improve learning,” explains Scassellati.

According to the study leader, the children’s attention was improved even a month after the sessions were over. Their behaviour was also more social, not only with their families but also with other people.”

José Manuel del Río remarks that the study they are preparing in Spain is “more ambitious and has a higher sample of children than that of Yale University.” But to carry it out –he adds– “we need financing to cover some of the expenses; our company is a small one and we can’t do so on our own.”

Del Río and his partners are still in search of this sponsorship, which would allow them to test this desktop android in 50 households with a well-prepared clinical trial. Only in this way will they be able to determine if the tenacious work of Lisa Armstrong and her son Juan with the small Aisoy robot, which has changed their lives, could be of help to more autistic children

Founded in 1989, POST was the world´s second scientific advisary office and is the oldest one still active. Its forerunner was the US’s Office of Technology Assessment (OTA), which operated between 1972 and 1995 until the Republicans closed it down for political reasons as it was not always in agreement with its ideas.

“[POST] started out as an office financed by external organizations,” explained one of the knowledge exchange directors, Sarah Foxen, during our visit to her office. Nowadays, it obtains its resources from both houses (the Lords and the Commons, equivalent to Senate and Congress in Spain) and its annual budget is about 600,000 pounds sterling per year (about 680,000 Euros). It is composed of 14 independent officials, governed by a board of MPs and external researchers.

A look at the future in four pages

The flagship product of POST is its ‘notes’, four-page documents that compile the available evidence on a certain subject. “They are accessible, balanced and impartial briefings on an area of research that we believe will be important and generate discussions in the future, so it’s useful for parliamentarians to have basic knowledge,” says Rowena Bermingham, one of the Social Sciences advisors of POST.

They do not tell politicians what they should do: “We only present evidence in an impartial way”, summarizes the Head of POST

Each written sentence is an objective fact that includes a source. The document does not make recommendations or tell politicians what they should do: “We only present evidence in an impartial manner,” summarizes Grant Hill-Cawthorne, the Head of POST. It is a ‘lowest common denominator’ of the available data, which also highlights the points where there is still no consensus.

The value of these texts lies in their prospective nature, the result of what is known as “horizon scanning”. Hill-Cawhtorne gives the document on mitochondrial diseases published in 2014 as an example. “The note talked about what would later be known as ‘three-parent embryos’, and gave enough background information on this technology and its implications so that parliamentarians could discuss the law and change it.” In 2015, the United Kingdom became the first country in the world to approve this technique of in vitro fertilization.

A note by the POST

The challenge of impartiality

Climate change, transgenics, nuclear energy ... Science does not escape ideology, personal biases and political and business interests. Therefore, one of the greatest challenges of an organization such as POST is that of preserving its independence and credibility, and generate non-partisan texts.

Here the board comes into play. This an essential part of POST composed of 14 parliamentarians from the different parties and independent researchers representing centres such as the Royal Society. Its duty is to make the final selection of topics that the office staff will prepare. They also review the document before its publication, although the final approval is given by the head of the office. Above all, they defend the usefulness and relevance of the office to prevent it from ending up like the US’s OTA.

The reliability of POST documents is due to the large number of experts involved in its drafting. This explains why each document requires three months’ work once the subject is approved. “We interviewed more than twenty industry experts, regulators, academics, charities, government members and think tanks ...,” says Bermingham. To this we must add the scientific literature. Once all the available evidence is gathered, it is edited until a draft is prepared, ready for internal review.

One of the great challenges of the scientific advisory office is that of preserving its independence and credibility

“It is a two-hour round table where we go line by line: is it accessible? Is it balanced? Is it impartial?” says Bermingham. After that, the document is returned to academics and experts for a peer review “as if it were a paper”. The document is re-edited with the suggestions received until it is reviewed and approved by the POST director.

The almost 30 years’ experience of POST also speaks in its favour. “Parliamentarians know that we have a review process and they trust the process and the reputation, which the product has gained over time,” says Foxen. In addition, it is possible to check on the internet who has been asked and who has reviewed each of the documents. Climate change may entail an ideological factor, but temperature data are just numbers.

The Palace of Westminster houses the Parliament of the United Kingdom. / Wikipedia

The POST has also a didactic task. Each note is written by a PhD student who is an intern at the office for three months. “The idea is to train the next generation. Even if they go back to the academy later, they will have seen how Parliament operates and how we work here”, explains Bermingham.

In fact, many PhD students end up working in POST or in related positions. Bermingham and Foxen are two examples of this. Helle Abelvik-Lawson is finishing her PhD and her doctorate and internship. Her story is similar to that of her fellow veterans: “It seemed to me a very interesting way to try something new and use my research skills to do something rigorous and analytical.” Her document is about harassment, has already gone through four revisions and will be ready for publication in December.

Micro-plastics and sugar

Measuring the impact of a scientific advisory agency is not easy. Political changes are slow and difficult to correlate with a single cause. “We try to see if people quote our work and our notes are often quoted in academic literature,” explains Hill-Cawthorne .

“It is great when a politician thanks you and you see that he has used data from your note in his debate,” says Bermingham

In 2016, POST published a summary on marine microplastics that highlighted the harmful effects they can have on the environment and on human health. For this reason, the Parliament's Environmental Audit Commission carried out an investigation and recommended the prohibition of micro-beads used in cosmetics. Since this year, its use has been illegal.

Sometimes a topic is revisited as its investigation progresses. Hill-Cawthorne remembers the note in 1992 on sugar and health, when "the only existing evidence was that it provoked cavities". Evidence emerged about its relationship with diabetes and obesity and they wrote a new note in 2015: “It led to a discussion as to whether sugar should be taxed or not and we wrote another one, in 2016 , about its implications.” Since this year, soft drinks have been more expensive in the United Kingdom.

Bermingham adds that it is not necessary to make a historic law change to talk about success. “We are giving politicians tools to do their job better and that’s important. It’s great when someone thanks you and you see that you they have used your note in their debate.”

The seeds of a Spanish POST?

The British scientific advisory office is the oldest and one of the largest in the world, but it is not the only one. Germany, France, Sweden, México and even the European Parliament are just a few examples of others. The citizen initiative Ciencia en el Parlamento (Science in Parliament or CeeP) was born in 2017 as a response to the lack of ‘affection’ between politics and science in Spain.

So far, the president of the Spanish Parliament, Ana Pastor, has already promised the creation of a similar office after meeting with the promoters of CeeP. In addition, on November 6th and 7th there will be a series of events in Parliament, in which FECYT and Cotec participate, and which include debates between politicians and scientists.

In Spain, the president of the Parliament has promised the creation of a similar office after meeting with the promoters of Ciencia en el Parlamento

Andreu Climent, researcher at the Hospital Gregorio Marañón in Madrid, is the ideologue of CeeP. He explains that the idea of these sessions is to “emulate” the manner in which a scientific advisory office works with the legislative branch. To do this, they have developed twelve documents similar to those of POST, focusing on topics such as artificial intelligence and family conciliation.

Climent makes it clear that the goal of CeeP is to create the environment for the office to emerge, not to actually become the office. “24 volunteers have carried out this work, but if you want it to work, you have to do it well. This is like the Netflix free trial month.”

The researcher says that explaining what scientific advice consists of, to both scientists and politicians, is a challenge. “Here we are used to having an expert come, tell us his point of view and that is the Bible, but it’s not really like that. It's a matter of seeing how knowledge of a subject can help one’s legislative work.” What matters is not that the decisions are “based on evidence” but “informed by evidence”, which will contribute to their being “more successful.”

Team of “Ciencia en el Parlamento”. / Cotec

Empowering civil society

“What we want is a situation in which, when a politician proposes something, the rival can’t say ‘you haven’t read this, don´t you come to me with nonsense,” says Climent. “It’s not so much a matter of changing politics as of raising the level of the discussion. Instead of speaking about what you've read on the internet, you speak on the basis of something that’s been reviewed and cross-referenced.”

“What we want is a situation in which, when a politician proposes something, the rival can say ‘you haven’t read this, don´t you come to me with nonsense,” says Climent.

The researcher stresses the importance of understanding that scientific evidence “is what many people agree on”, and that this “sometimes is much less than state-of-the-art knowledge.” It is also important to understand that “science does not have absolute answers” and the need to be “critical of sources”. Communicating all this to society and politicians is another of CeeP’s goals.

Will the ‘Spanish POST’ come to fruition or will it end up like the American OTA? Climent is very optimistic, and not only because of the great reception he says he has received among all groups in Congress. “I think it can work because we finally have a scientific sector large enough for people with research training to do things that aren’t pure academia and solve problems that aren’t entirely scientific.”

Climent maintains that the key for the office to be born healthy is to get it to have an independent and credible structure before it is institutionalised. “Let's design the patronage of politicians and scientists well, with MPs who understand that this doesn’t go against an ideology, although it does sometimes clash with this; rather, that it will eventually be profitable for the whole system.” The lesson of his British counterpart is that the project will only last if the MPs truly believe in it.

Immediate answers to urgent issues

The prospective nature of POST is complemented by the other two types of advice available to the British Parliament, both reactive. One of them is the library. That of the House of Commons has 75 researchers divided into 8 teams, where politicians can receive unbiased information on any subject.

Ed Potton is the head of the Science and Environment section: “We exist because parliamentarians can’t know everything. Unlike POST, which is long-term, we focus on things that happen today, tomorrow or in two weeks’ time.”

These documents have no page limit (they may exceed one hundred pages). They are written by specialists, such as doctors and economists, based on public data, to give a quick answer to current questions. According to Potton, the collection amounts to 900 documents on topics ranging from medical cannabis to fracking and care is taken to keep them updated.

The other type of reactive advice is that provided by commissions such as the Science and Technology commission, composed of parliamentarians with the support of officials. These carry out investigations and pose questions to the Government, as in the case of micro-plastics. “In the end, a report is written with the evidence found and with recommendations to the Government, which has two months to respond,” explains commission specialist Harry Beeson, who also did an internship at the POST. He considers that “over 40% of the suggestions are taken into account.”

In the end, its work is intertwined with that of POST: its last report, focused on how to monitor and improve research activity, started from a note published by POST last year. Although it is too soon to know this, Beeson claims that the Government “has responded well.”

A researcher at the PoliMi - Polytechnic University of Milan (Italy), Alberto Antonietti is one of the scientists behind CerebNEST. His objective is to bridge some of the sub-projects that make up the HBP. “The main idea is to integrate the work that neurophysiologists and robotic engineers do,” he summarizes for Sinc. In other words, “to gather all the knowledge we have about the cerebellum in order to integrate it into a model.”

“We want to gather all the knowledge we have about the cerebellum in order to integrate it into a model”, says Antonietti

The model of the cerebellum developed in CerebNEST draws from everything we already know about the number of neurons and the connectivity of this area of the brain, all thanks to the collaboration that PoliMi has been maintaining for years with the neurophysiologists of the University of Pavia, who are HBP core partners.

“We want to build computational models of the cerebellum with different degrees of complexity and test if they work correctly,” summarizes the bioengineer. One of the applications of this model that Antonietti has tested was published this year in the International Journal of Neural Systems.

The challenge of building such models lies in our current limited knowledge of the brain. Antonietti says that, although the information we have is partial, we already have plenty of data, enough to gain an exhaustive view of this mysterious organ.

“The difficulty here is that there are many scales,” says the researcher. “You can measure brain activity in a very general way and then go on to smaller scales: a specific area, a part of the cerebellum, a neuron, ion channels, proteins ... There are also different time scales, because there are things that happen in a millisecond and others in a year".

Let me blow into your eye for the sake of science

In his latest study, Antonietti and his team tried to complete one more piece of the puzzle, for which purpose they collected data from human volunteers who carried out conditioning protocols by blinking. These consist in the association of two stimuli, as the cerebellum “is the part of the brain focused on learning this association.”

“Volunteers were conditioned with a first stimulus and then, after a while, with a second one.” The latter was an “annoying” stimulus, like a small breath of air in the eye. The first time, the participants would close the eye after the stimulus but, after repeating the process dozens of times, they were able to close it beforehand to prevent discomfort, thanks to a mechanism directed by the cerebellum.

Antonetti’s model measures three parameters related to this mechanism of plasticity, which evolves naturally during a person's learning. The data of the experiment served to analyze which parameters influence behaviour and make the volunteer learn to prevent the annoying stimulus. The results showed that the responses of the model and those of the volunteers were not markedly different.

The final goal within one or two decades is that of personalized models for each disease and patient

But what is the artificial cerebellum good for? Why bother dozens of volunteers? “One application of this model is that of studying things that we couldn’t do experimentally, since you cannot place a million electrodes in someone's brain to measure what happens,” says Antonetti. “The model gives you the possibility to explore and access everything.”

This artificial cerebellum could also reduce animal experimentation, since “it would be possible to do so by simulating the same neural network with the model.” Antonetti explains that the final goal within one or two decades is that of personalized models: “Ours is general, but you could customize these parameters to fit the behaviour of a specific subject.”

This would make it possible, for example, to construct models for a disease in a specific patient, in whom “the affected neural mechanisms may be different.” The bioengineer goes even further, suggesting the possibility of simulating treatments to optimize them for each disease and patient, thus favouring a kind of personalized medicine. “It's a long-term thing, but it's the direction in which the HBP wants to go.”

SINC produces scientific news for the European project SCOPE, coordinated by FECYT and funded by the European Union through Horizon 2020, its funding program. The SCOPE mission is to communicate visionary research results of partnering projects in the framework of the Graphene Flagship and the Human Brain Project, as well as to enhance the FET Flagships partnering environment in the European Union.

"The robot can experience the world in a similar way to that of a child and has the potential to develop a similar type of cognition," Matej Hoffmann, the main researcher of the Czech project RobotBodySchema, has explained to Sinc.

His team is one of many who are using this humanoid open source robot, designed by the Italian Institute of Technology. In their case, they chose it because its body has proportions similar to a baby and because of the unique electronic skin.

Disciplines as disparate as philosophy, psychology, linguistics, neuroscience, artificial intelligence and robotics have spent decades studying cognition, the faculty that processes information and includes skills such as learning, reasoning, attention and feelings.

“The robot can experience the world in a similar way to that of a child”, says Hoffmann

While psychology and neuroscience favour studies with people, artificial intelligence is more inclined towards computer models, interpreting that faculty as mere information processing.

"Cognition is inseparable from the physical body and its sensory and motor systems, so computational models are not enough," says Hoffmann, who heads the Humanoid and Cognitive Robotics group at the Czech Technical University in Prague.

The advantage of robotics and its androids when studying these processes is that they contemplate contact with the environment. In addition, they can simulate changes or injuries impossible to practice on human models.

An artificial skin to feel

The best example of contact is when one person touches another. Can a robot notice that sensation and identify the part of the body in which it has happened? This is precisely what Hoffmann and his team have achieved.

Thanks to the thousands of sensors that make up the artificial skin of the humanoid and the development of a new algorithm, the engineer and PhD student Zdenek Straka has succeeded in making the robot develop and learn a map of the surface of its skin -called homunculus- similar to that generated by the human brain and that of other primates.

Monkey and robot somatosensory homunculus. / Zdenek Straka, Michal Vavrecka and Matej Hoffmann

"A touching of the robot’s body is transmitted to a particular region of this map. It will then be up to the android to figure out how to interpret or use that information," says Hoffmann. The algorithm also adapts to bodily changes. If a part of the skin stops feeling, the robot's 'brain' reassigns that area to other parts of the body.

The have succeeded in making the robot develop and learn a map of the surface of its skin similar to that generated by the human brain

"Touch is a somewhat underestimated sense, but it is actually extremely important," emphasizes Hoffmann. Thanks to touch we are aware of the entire surface of the body, which allows us to perceive different types of contact, from a caress to a collision. According to experts, equipping robots with this sense will improve their future contact with humans.

Robots also need their space

To go back to people, there are people who feel uncomfortable with excessive contact or an excessive closeness with their interlocutor, because their living space – their peripersonal space – is being invaded. Hoffmann and his team in collaboration with the Italian Institute of Technology are trying to get the androids to appreciate this space.

"It is very important for the safe interaction between robots and humans, especially in the context of those collaborators who leave the security areas and share living space with humans," the expert points out.

The iCub humanoid learning about its peripersonal space. / Alessandro Roncone and Matej Hoffmann

As a first step, Hoffmann and Straka have developed a computer model based on a neural network architecture within a two-dimensional scenario, where the objects approach a surface that simulates the skin.

At the same time, the researcher together with his colleagues from Italy are applying the model to humanoids: to learn about approaching objects as well as to interact safely with humans. Hoffmann's student Petr Švarný is further developing this technology such that it can pass safety regulations as per current legislation. "Robots must be able to anticipate contacts when something penetrates the limit of their safety area," states Hoffmann.

The sensations of a baby

Although mainly working with androids, researchers have also studied sensations experienced by humans, more specifically, babies of between three and twenty-one months of age. With the help of psychologists, they have placed a device that vibrated on different parts of the body and face of the baby and analyzed how they reacted to these stimuli.

Researchers have also studied sensations experienced by humans, more specifically, babies of between three and twenty-one months of age

The main conclusion is that infants are not born with a map or a model of their own bodies. For this reason, their first year of life is decisive for them to be able to explore their bodies and learn the patterns that they will then repeat, "such as when they have to scratch themselves in a specific area," the engineer points out.

This and the previous investigations are part of the RobotBodySchema project, whose final objective is to study the mechanisms that the brain uses to represent the human body.

Analyzing the mind from the prism of robotics entails an effect as fascinating as it is little-explored: the humanization of machines. "We apply algorithms inspired by the brain to make robots more autonomous and safe," concludes Hoffmann.

Recognition in the mirror - babies and robots. / Pablo Lanillos

RobotBodySchema is a Partnering project of the Human Brain Project, one of the Emblematic Research Initiatives of Future and Emerging Technologies (FET Flagships) of Horizon 2020 - the framework program for the financing of the research of the European Union.

The Sinc agency is participating in the European SCOPE project, coordinated by FECYT and financed by the European Union through Horizon 2020. The objectives of SCOPE are to communicate visionary results of research projects associated with the GrapheneFlagship and the Human Brain Project, as well as to promote and strengthen relationships within the scientific community of the Emblematic Research Initiatives of Future and Emerging Technologies (FET Flagships) in the EU.

Since then, many other studies have confirmed the validity of this substance for specific cases of patients with severe depression, all of them, admittedly, using animal models. In May 2016, the journal Nature also published how ketamine was able to combat this pathology in mice.

These molecules rapidly relieve depression without causing side effects even at doses 40 times greater than those used in the ketamine experiment

The team at the University of Maryland found that mood enhancement is not caused by the drug itself, but by one of the products that are formed when the liver breaks it down into smaller molecules: the metabolite (2R, 6R) -hydroxyinorketamine (HNK).

In their study, the scientists saw that these molecules rapidly relieve depression without causing side effects even at doses 40 times greater than those used in the ketamine experiment.

A single administration of the compound achieved antidepressant effects similar to those induced by ketamine, which also lasted for at least three days, with the difference that this substance did not generate any addiction, the warhorse of the treatment.

"Although there is some evidence about its use, there is still no approval for clinical practice," explains Eduard Vieta head of the Psychiatry and Psychology Service of the Hospital Clínic de Barcelona, to Sinc. For the moment, its use in Europe is restricted to research.

"In Spain, institutions such as the Hospital Clínic de Barcelona have a protocol for the compassionate use of ketamine in patients with severe depression who are resistant to the usual treatments," adds Vieta.

This week, an article published in The American Journal of Psychiatry has gone one step further. The article shows the benefits of the rapid action of ketamine for depression and suicide in 68 patients, although it warns about the risk of abuse and the need for effective controls.

The new work, led by experts from Yale University (USA) and the pharmaceutical company Janssen, reveals how a ketamine nasal spray -synthesized for the first time in 1962- shows promise in the rapid treatment of symptoms of severe depression with imminent risk of suicide.

"We must be very cautious because to date there have been no controlled clinical studies with a significant number of patients," explains Artigas

According to the authors, this therapy could solve the delay in treatment due to the delayed effect of most common antidepressants, which take four to six weeks to be fully effective. However, there is still a long way to go before getting the approval of the drug regulatory agencies (FDA in the US or EMA in Europe).

More studies are necessary

At the moment, there is no evidence on the side effects of the continued use of these substances. As Francesc Artigas, from the Institute of Biomedical Research of Barcelona (IIBB / CSIC), indicates to Sinc, "it is not yet known in detail how these compounds act. Now they are in an experimental stage, that is, they are not prescribed to patients except those included in clinical trials".

Yale experts have pointed out the addictive potential on the basis of existing reports of prescription ketamine abuse. The findings published this week underscore the need for additional research to prevent new epidemics.

"We must be very cautious because to date there have been no controlled clinical studies with a significant number of patients," continues Artigas. "Ketamine has only been tested on people who fail to respond to multiple conventional treatments and there’s no conclusive evidence of its effectiveness on non-resistant patients or on those who only partially improve with conventional treatments”.

There are other addictive substances that have been considered for antidepressant treatment, such as psilocybin or ayahuasca. Each one of these acts differently and only ketamine is accompanied by controlled and clear data regarding its efficacy.

There are other addictive substances that have been considered for antidepressant treatment, such as psilocybin or ayahuasca

Use under medical supervision

All the experts are aware of the risks, which is why they are careful to note that its use is neither miraculous nor for everybody. "These are psychotropic substances with high risks in both occasional and chronic use, and should only be used by expert teams in a hospital environment and with complex patients," says Vieta.

The researcher, who has participated in phase III trials - the last stage before the FDA contemplates its approval - with proven effectiveness within minutes in the depressive stage of bipolar disorder, warns that its recreational or outpatient use can be highly pernicious.

"An addiction can be created and a psychosis triggered if it is consumed by adolescents or high-risk people. Psychotropic substances, in general, have positive and negative effects. When they are used under medical supervision and on the appropriate patient, they can be beneficial, but their recreational and uncontrolled use can become extremely harmful," states Vieta.

"We must not forget that LSD was marketed in the 50s as an aid to treatment with psychotherapy, but was then withdrawn from the market due to its hallucinogenic properties," Artigas concludes.

The figures of depression

According to the World Health Organization (WHO), depression is characterized by sadness, loss of interest or pleasure, feelings of guilt or lack of self-esteem, sleep or eating disorders, feeling tired and lack of concentration. It can become chronic or recurrent and hinder the ability to cope with daily life, such as going to work or school.

Bibliographic references:

Carla M. Canuso, et al.: Efficacy and Safety of Intranasal Esketamine for the Rapid Reduction of Symptoms of Depression and Suicidality in Patients at Imminent Risk for Suicide: Results of a Double-Blind, Randomized, Placebo-Controlled Study’. The American Journal of Psychiatry (2018).

Robert Freedman, M.D., et al.: ‘Can a Framework Be Established for the Safe Use of Ketamine?’ American Journal of Psychiatry (2018).

Zanos, P. et al. ‘NMDAR inhibition-independent antidepressant actions of ketamine metabolites’. Nature http://dx.doi.org/10.1038/nature17998 (2016).

N. Li, B. Lee, R.-J. Liu, M. Banasr, J. M. Dwyer, M. Iwata, X.-Y. Li, G. Aghajanian, R. S. Duman, mTOR-dependent synapse formation underlies the rapid antidepressant effects of NMDA antagonists. Science 329, 959–964 (2010).

This aversion manifests itself at an early age, “when children find it difficult to count or compare magnitudes”, as Erin Maloney, professor of cognitive psychology at the University of Ottawa (Canada), has explained to Sinc. This specialist in learning problems seeks to have the results of her studies on numerical anxiety applied to change educational practices and policies.

Anxiety about numbers depends on the way each one integrates mathematics into their own personality

Mathematics is a ladder where each rung matters. “At the age of about six, children compare themselves with others and decide if they are good at maths. If they conclude that they are not, they become disillusioned and their learning gets worse”, says the writer and mathematician John Mighton, founder of the JUMP Math program, which has been designed for teachers to restore confidence to students. He himself had problems with the subject when he was a young boy.

Recent works suggest that this blockage is the product of something more than poor skills and has much to do with psychosocial factors. A study of 181 first-year students at the University of Western Ontario (Canada), published in 2015 in the Frontiers in Psychology journal, showed that anxiety about numbers depends on the way each one integrates mathematics into their own personality, everyday lives and in way of facing life.

Are there “letters people” and “numbers people”?

Some teachers think that mastering mathematics is just a matter of motivation and desire. This was the case of Onofre Monzó, president of the Spanish Federation of Mathematics Teachers (FESPM), who after more than thirty years of teaching is no longer that sure: “It is obvious that there are people with a special ability for mathematics, as happens with the artistic predisposition”.

Even so, making mistakes in this matter should not be a problem. “It requires practice and it’s important for students to understand that making mistakes is part of the learning process”, adds Professor Maloney. It is precisely the fear of failure that causes rejection in many students. So, why are people still talking about bad maths students?

“An intellectual block with arithmetic is misinterpreted as a limitation or impossibility on the student’s part”, observes Rico

“Neither the school nor the families accept the origin of the problem”, explains Luis Rico, professor of Mathematics Didactics at the University of Granada. “When a student shows symptoms of dyslexia, support strategies are sought, but an intellectual block with arithmetic is misinterpreted as a limitation or impossibility on the student’s part”, observes the academic. “Maybe what he needs are resources, support teachers or exercises”, he adds.

Breaking the 'didactic contract'

From the moment they enter the classroom, both the students and the teacher have expectations about what is going to happen. This is one of the problems of the current didactics of mathematics, explains José Ángel Murcia, a mathematician and university professor specialized in teacher training.

“In the face of a problem, students have been accustomed to identifying the data, applying the right operations for the moment and looking for a single solution. But mathematics should be something else”, states Murcia.

He proposes breaking the 'didactic contract' with problems where the formulation is deceitful or the exercises have several solutions, as in the comparison of geometric figures. He collects such resources in his blog Tocamates, which, according to his own declaration of intent, is “a proposal for mathematics to be touched, felt and enjoyed”.

On his blog, José Ángel Murcia suggests to play with mathematical concepts and objects, such as these soft polyhedrons. / Tocamates

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According to this populariser of maths, today's classroom does not encourage critical reasoning, divergent thinking or creativity. “Arithmetic is the block that takes up the most time in primary and secondary education, but it can be standardized as well as outsourced to machines. Other blocks such as measurement, geometry and statistics and probability aren’t enhanced”, he laments.

Touch, feel and learn

Murcia's proposal is not new. As early as in 1979 Stuart Plunkett, of Homerton College, Cambridge (United Kingdom), published a paper entitled Decomposition and All That Rot, in which he analyzed how we learn to calculate and established when the operations had to be solved in one’s head, with pencil and paper, or with technology. “He was ignored. 40 years have already passed”, adds Murcia.

To learn by touching, in some schools in Mexico, a system of addition and multiplication based on the use of twigs, beans and macaroni has been implemented. It is the Mayan system of mathematical operations, with which children of between six and eight consolidate the elementary structures of logic and abstract thinking. Just as their ancestors did.

Whoever wants to practice these skills can do so with an online Mayan Math game created by the Smithsonian Museum of the American Indian.

The magician nominated for the 'Nobel Prize' of teachers

But you do not have to cross the ocean to find original didactic initiatives. In Albaida del Aljarafe, a village in the province of Seville, Xuxo Ruiz has been a tutor at the CEIP San Sebastián school for ten years. And he is also a magician. During his twenty years' experience in primary education he has used magic to teach physical education, environmental knowledge and mathematics.

His method made him the Spanish nominee for the 2018 Global Teacher Prize, the 'Nobel Prize for teaching', which has a million-dollar prize.

“Spare the magic and spoil the child”, Ruiz explains to Sinc. The teacher says that with 'mathemagics' his students are more motivated; enhance their creativity and improve their communication skills. “After explaining a mental calculation game, children perform magic tricks before their classmates, other teachers and their parents. They would never go to the playground during breaks to do calculus”, says the teacher. “They connect at an emotional level and don’t forget these explanations”, he insists.

However, not all teachers can be 'mathemagicians' or need to be. Monzó warns that “what works with one teacher may not work with another. Magic is one resource among many others within the wide range teachers must have at their disposal”.

Apps, games and experiences

Among the didactic resources for practicing mathematics there are countless apps that some teachers use in the classroom.

For example, with Kahoot students create an online user in their own smartphones. “On the blackboard, questionnaires are projected, ranging from concepts to equations”, explains Ana Belén Martín, a mathematics teacher at the IES Antonio Calvin de Almagro, Ciudad Real. By identifying students by their usernames, it is possible to implement customized reinforcement plans.

“The idea is not to produce a resource, but to use it as an example of a methodology for practicing mathematics in a more experiential manner”, says Murcia

With Photomath, students get the solution to the problems by scanning the operations with the camera of their smartphones. Although it might seem like the ideal tool for copying, “teachers can tell when students solve exercises in a very different way from how it was explained in class”, Martín assures.

Murcia explains that the teachers he trains ask him for tools of this type. In his Tocamates' blog, he collects strategies such as “the rest counts” to practice division or the number plates game for multiplication.

But what matters for him are not apps or games, but the method: “The idea is not to produce a resource, but to use it as an example of a methodology that allows children to practice mathematics inside and outside the classroom in a more experiential and productive manner”.

Youtuber teachers

The more progress is made in teaching, the more complex the subject becomes until it “acquires its own, abstract and formal language, which in some cases is a problem”, says Monzó. Mathematical anxiety manifests itself when it comes to choosing university education; it is greater in health studies than in technical or social science courses, and it is accentuated in women.

And it also marks future maths teachers. “Mathematicians demand a level of formalism that can cause teachers of elementary levels to have a complicated relationship with the subject”, Murcia explains.

Perhaps because of this, digital teachers have been gaining much popularity among late high-school and early university students. Some of these youtubers like David Calle (unicoos) or Sergio Castro (profesor10demates) have been nominated for several awards. The former has one million subscribers.

“Digital education perpetuates the traditional type of 50 years ago if the relationship with that teacher consists, at most, in moving forward or backward in the video”, says Monzó

But YouTube lessons are no panacea. “Beginning a free educational route that, upon reaching a certain point, asks us for commercial compensation without offering valid guarantees is something to be avoided”, warns Rico.

Monzó insists on the importance of the personal relationship between teacher and student. “Digital education perpetuates the traditional type of 50 years ago if the relationship with that teacher consists, at most, in moving forward or backward in the video. You can repeat the same thing a thousand times but there is no interaction”.

For the president of the FESPM, the renewal of teaching methods requires the renewal of the teaching staff. “It means rethinking access to teacher training schools and the training of teachers and graduates in mathematics. A continuous training of practicing teachers must be planned”, Monzó concludes.

Murcia goes even further: “The solution is not to demand a higher level to enter the Faculty of Education” he muses, “but to ask ourselves what to teach in mathematics and how to teach it”.

We are not that bad (or at least, not so frustrated)

The PIACC report measures the mathematical skills of adults. In a list of 23 countries, Spain is in the last place and Japan in the first. In the PISA program - which measures the skills of 15-year-olds - Spain's position in mathematics is not good either. Experts provide a different view.

Luis Rico participated in a meeting about PISA in Spain with representatives of the Asian countries that score the best. One of the insights of those meetings was that, although the Asian countries are at the forefront in performance, they score very poorly on the attitude.

“The attitude of Spanish students is better than that of Asians. Ours make mistakes more often, but they are not so frustrated. Making fewer mistakes entails more work and a level of pressure that eventually generates rejection”, he explains.

According to the president of the FESPM, “although we could do better, in Spain there is a very high rate of school failure and PISA also includes repeaters. Our inequalities are due to the socioeconomic level of the families, and that is why it’s more difficult to intervene”.

From her position she has been promoting gender equality in research for decades, as co-founder of the Association of Research and Technologists Women and as president and member of several equality commissions.

López Sancho was one of the participants in the Conference on Gender and Diversity organized by the Human Brain Project last week at the Technical University University of Madrid.

This macro-project funded by the European Union aims to accelerate research in neuroscience, computer science and medicine applied to the brain. "You can make history in the gender dimension", encouraged Valentina Perrotta, representative of the European Commission.

The neurocientist Javier de Felipe wonders how many good women scientists do not occupy leadership positions

The figures leave a wide margin for improvement. Only 15% of leadership positions are held by women. To know the opinion of the members of the HBP, the EAF organization Berlin (Germany) designed an online survey.

The most surprising result was that 41% of the men who ran teams thought that both men and women were practically equally represented in positions of power, something that does not correspond to reality.

Javier de Felipe, leader of one of the subprojects of the HBP, wonders how many good women scientists do not occupy leadership positions. "Supporting women in science is much easier than it seems," he told Sinc.

In the case of women scientists with children, the researcher proposed financial aid to support care and compensate for the family burden in the curriculum, not penalizing the woman who has published fewer scientific articles due to maternity.

Policies for equality

The survey also analyzed the jobs of couples and spouses of European project leaders. While almost all (94%) of women have spouses with highly qualified careers, only 39% of men live with women who also hold positions of responsibility.

"We do not want to make men feel guilty," said Krista Varantola, vice-chancellor emeritus of the University of Tampere (Finland) and independent advisor to the project. To avoid these imbalances, Varantola opts to educate in equality very soon and introduce different structures of change, as is done in the Nordic countries.

In the case of Sweden, women scientists have several children and for them there is no drama to choose between having offspring or a career, as recalled the philosopher of the University of Uppsala (Sweden) Kathinka Evers, who directs another of the HBP subprojects.

"As a leader I impose gender equality," she explained. In her opinion, a good leader must be excellent in her field and also have intelligence, empathy and respect for diversity. Regarding the separation of the private life of the professional, Evers recommended respecting the weekends.

Krista Varantola, Chris Ebell, Katharina Schiederig, Ineke Klinge, Kathinka Evers and Javier de Felipe. / Sinc

Excluding gender costs lives

The weight of gender in experimental studies was also analyzed during the conference. Between 1997 and 2000 in the United States ten drugs were withdrawn from the market because they seriously damaged health and eight of them had a negative impact on women.

"Doing erroneous research costs lives and money," declared Londa Shiebinger, a professor at Stanford University (USA) and director of the Gender Innovations program. Regarding the biological differences between men and women, Shiebinger does not believe that there is a male and a female brain and pointed out that factors such as education, experience or bias influence its development.

“If you have an experimental design that does not take it into account you can reach erroneous conclusions”, says Amaia Carrión

De Felipe does consider that there are brain differences between men and women, especially in the circuits, as some of his investigations have revealed. "You have to set objectives to study gender differences, just as if it were another scientific objective," he said.

Dyslexia, for example, is a disorder with a higher prevalence in men than in women. Amaia Carrión, researcher of the MULTI-LATERAL project of the HBP working in the Max Planck Institute of Psycholinguistics of Nijmegen (The Netherlands), has studied this disorder in minors and has been able to prove it.

"This reflects that there is something biological that predisposes differently and if you have an experimental design that does not take it into account you can reach erroneous conclusions," she told Sinc.

His career as a researcher has been between France and the Netherlands, where she is currently working. The scientist recalled that at the Max Planck Institute of Psycholinguistics, when a new job is announced, they are obliged to include a sentence that reminds women of equal status. An example of structural changes that level imbalances.

Biases in artificial intelligence

Londa Shiebinger did the test. She introduced an article in Spanish into the Google translator; the article spoke of her and she wanted it translated into English. The result was that instead of talking about "her", all the pronouns were masculine. "Artificial intelligence has gender biases," he warned.

Although until 1968 in the United States it was usual for books to include masculine pronouns almost in their entirety, from that date the tendency began to change and more feminine were included. The proportion went from four male pronouns to one feminine pronoun until 1968, to two over one in the year 2000.

"If we do not intervene, the historical stereotypes will continue," said the expert. As a solution, she proposed to work in multidisciplinary teams of computer scientists, lawyers, historians and gender experts to correct the algorithms used by translators, search engines and other artificial intelligence devices.

The Sinc agency participates in the European SCOPE project, coordinated by FECYT and funded by the European Union through Horizon 2020. The objectives of SCOPE are to communicate visionary results of research projects associated with the Graphene Flagship and the Human Brain Project, as well as promote and strengthen relationships in the scientific community of the Emblematic Research Initiatives of Future and Emerging Technologies (FET Flagships) in the EU.

"When he was just a doctoral student, Hawking was already able to take Einstein's theory of relativity to its limits and show that it failed to describe aspects such as the beginning of the universe or the end of a star that ends up forming a black hole,” Professor Roberto Emparan from the University of Barcelona (UB) points out to Sinc.

With him, black holes turned gray

Black holes have been one of the central objectives of Hawking's research. His first breakthrough came in 1970 when he and Roger Penrose applied mathematics to these dark objects and showed that a singularity, a region of infinite curvature in space-time, also underlies the beginning of everything: the Big Bang.

"The first thing that made Hawking famous was this proof that the expansion of the universe meant that the known laws of physics were 'broken' in the past during that event we call the Big Bang," explains John Ellis, a researcher at the European Particle Physics Lab (CERN) and professor at King's College in London.

Ellis, who considers Hawking one of the best theoretical physicists of the last 50 years, highlights his most famous contribution: "He proved that black holes are not completely black; that is, they emit quantum radiation, which implies that in the end they end up fading".

The astrophysicist Pilar Ruiz Lapuente, of the Institute of Cosmos Sciences (UB), sums it up in one sentence: "The quantum treatment of black holes makes them only gray," and explains it: "A black hole is a region of space where the gravitational field created by an object is so strong that radiation cannot escape it. However, taking into account the quantum processes that occur at its outer limit (called the event horizon), there are particles that can be emitted from there. These constitute the so-called "Hawking radiation," which is now being recorded in laboratories.

Another researcher, Alicia Sintes, professor at the University of the Balearic Islands and leader of the Spanish group of the international LIGO cooperation that has discovered gravitational waves, emphasises "the courage and persistence of Hawking," but points out that with these waves "we’ll be able to extract information about the Big Bang and what the expansion of the universe has been like, but nothing that makes it possible to measure the radiation of black holes".

It was in 1974 when Hawking published the study in which he resorted to quantum theory to claim that black holes could emit radiation in the form of heat and vanish. The times it takes for normal-sized black holes to disappear are as long as the age of the universe. However, the tiniest ones could do so before, releasing heat at a spectacular rate, with the energy of one million hydrogen bombs.

Crisis of principles in physics

The proposal that black holes radiate heat caused one of the most passionate debates in modern cosmology. Hawking argued that if a black hole evaporated, all the information that had fallen into it before would be lost forever. This contradicted one of the most basic laws of quantum mechanics and many physicists did not agree.

As José Luis Fernández Barbón, a researcher at the Institute of Theoretical Physics (UAM-CSIC) stresses, "the process by which black holes disintegrate slowly emitting quantum particles, far from representing an anecdotal detail, triggers a crisis of principles in the foundations of physics, a conflict between the two master pillars that represent the theory of relativity and quantum theory”.

"Whether black holes do or don’t destroy the information trapped inside them is a question that has dominated much of the speculation in fundamental physics during the last forty years," he adds. “Today, hundreds of theoretical physicists are still working on solving this dilemma, which has transformed our way of interpreting the quantum properties of gravitational force".

Emparan agrees: "Hawking explored how to overcome the limits of Einstein's theory by incorporating the effects of quantum, that is, how to combine the physics of the very large (gravity) with that of the very small: quantum. But what he found when combining them in the presence of a black hole was a paradox, a fundamental contradiction between both theories that continues to perplex us”.

Three lost bets

Hawking and his colleague Kip Thorne wagered an encyclopaedia – a baseball encyclopaedia, as it turned out – with the physicist John Preskill on whether information was lost in black holes. Hawking finally accepted in 2004 that he had been wrong, conceding that quantum fluctuations (small variations in the distribution of matter) can occur at the edges of black holes, meaning that information could escape and was therefore not lost. His long-time friend Roger Penrose never agreed with this change of opinion.

This was not the first time that Hawking lost a bet. In 1990 he had to pay Thorne a subscription to Penthouse magazine for mistakenly forecasting that the cosmic X-ray source Cygnus X-1 was not a black hole. More recently, in 2012, he also lost $100 with Professor Gordon Kane for betting that the Higgs boson would not be discovered

Quantum seeds that create galaxies

While a terrible gambler, Hawking continued to offer relevant contributions to cosmology. In 1982 he was one of the first to predict that during the first instants of the universe, when it began to expand by cosmic inflation, quantum fluctuations could act as seeds to create galaxies and, ultimately, stars, planets, life and everything we know today.

Independently, the Russian physicist Viatcheslav Mukhanov came to this same conclusion and the two were awarded a Frontiers of Knowledge Award in 2016 for these works, which have been experimentally confirmed.

In 2013, the Planck satellite of the European Space Agency detected very slight temperature variations in cosmic microwave background radiation, which can be related to the presence of quantum fluctuations and matter since the beginning of the universe.

Giant of dissemination

"Much of what we know about cosmology bear the marks of Hawking´s contributions," says Fernández Barbón, who also stresses his informative facet and his struggle, throughout most of his life, with his disease: "He has become such a recognizable character at a popular level that he will be remembered as one of the historical champions of the human species”.

The Prince of Asturias Award Hawking received in 1989 in Spain also recognized his role when it came to popularising scientific contributions about the origin and destiny of the universe.

"One example is his bestseller A Brief History of Time," recalls Ellis, who is amazed at what he was able to achieve despite his health problems: "The world has lost a scientific giant and an inspiration for all."

A new era of human expansion

"Hawking is the champion of a world in which possibilities have no border if we continue working together," says Professor Ruiz Lapuente, who also highlights some of the revolutionary projects that this visionary embarked on: "One of them is the Breakthrough Starshot initiative for the exploration of extra-solar planets, with nano-spacecrafts that will travel at speeds much greater than those of the ships we know, at 20% of the speed of light. This will mean the beginning of a new era of the expansion of mankind in the universe”.

"Stephen Hawking has not only been one of the most brilliant scientists in the last fifty years: he is one of the most extraordinary people in the history of mankind, someone who has shown that our destiny, however tragic it may seem, is not written," concludes Emparan.

All the sources consulted for this article have given a similar answer: unfortunately, it would be noticed very little. The CSIC researcher and first woman to get a Sociology Chair in Spain, María Ángeles Durán, believes that "the care strike that is really noticed is that of women", although "it would be good for men to have ‘a Japanese-style strike’. We would be very happy. This would be a strike that would make many people happy!”, she jokes during the telephone conversation.

"There are always more co-responsible couples, but the studies indicate that the men are dedicated, above all, to taking the children to nursery school in the morning, bathing them and being with them over the weekend," Teresa Jurado, the sociologist and researcher of the UNED and expert in social policies, youth, family and gender tells Sinc.

“If the care of young and old is stopped, the country stops, as it happened in Iceland”, recalls Pérez Sedeño

Eulalia Pérez Sedeño, professor of research in Science, Technology and Gender at the CSIC, recalls that the paid care of children and adults are also in the hands of women: "If that stops, the country stops, as happened in Iceland."

The data supports this impression. According to Eurostat, 95% of Spanish mothers aged between 25 and 49 spend some time every day looking after their children, compared to 68% of fathers. The differences are greater in domestic tasks, with 84 and 42%, respectively. It is true that men have higher employment rates than women (64.8% versus 54.3%), but also that this difference increases with the offspring: from 7.7 points in people without children to more than 26 when they have more than three kids.

This inequality in the distribution of tasks has an impact on women's careers. A study still awaiting review and publication in a scientific journal has aroused much interest in recent weeks. More than three decades of data from a country with generous family policies, Denmark, show that most of the wage gap between the genders has to do with children. Better said, with the differences in their care.

In Denmark, maternity leave is 18 weeks plus 32 additional weeks that can be shared between both parents. In addition, the Government offers subsidized day care centers during the first year of the baby's life. In comparison, Spaniards have 16 weeks, ten of which are transferable; and men, since January 2017, four. There are also parental leaves until the child is three years old.

Long, non-egalitarian leaves

These differences do not matter: the wage gap between Danish women and men is around 20%, as it is in Spain and countries without guaranteed maternity leave such as the USA. The study claims that 80% of this difference is due to motherhood because the rest of factors, such as lack of education and discrimination, are disappearing. Having a child penalizes mothers' income during the next decade, while women without children are not affected in the same way. Men, whether parents or not, are not affected.

"Policies that support reproduction do not always help women, because a long maternity leave can hurt their career. The strong subsidy for upbringing in Denmark doesn’t seem to be enough to eliminate the wage gap", summarizes the researcher of the University of Copenhagen and co-author of the study, Jakob Egholt.

Men are reluctant to change their work routine for fear of not meeting the provider stereotype

Not only is it difficult to recover one year in professional terms, but women assume 90% of the loss. In 2015, Danish fathers took an average of 31 days ... and mothers almost 300. This has led the country's authorities to launch the campaign 'Paternity leave: take it like a man'.

Nordic mothers are no different from Spanish mothers. An article published in 2015 in the Spanish Journal of Sociology declared that women are still the ones whotake leaves. Jurado points out the paradox that, in a world in which young people identify more and more with egalitarian values, the unequal distribution of tasks is repeated, especially with the arrival of the first child, because stereotypes "are very strong".

"We interviewed 68 couples who were waiting for their first child. The expectations were the same: to enjoy the baby, to continue working ... but when asking about the plans of each parent we saw that they were very biased," Jurado explains to Sinc. Biological and economic explanations came to the surface, related to breastfeeding and promotion possibilities. "Everyone takes their leave and inequality begins, which is structural because until 2007 nobody thought that parents could also have paid leave. We live in a time of great changes and desires for equality but still reminiscent of the past."

At the moment of truth, men are reluctant to change their work routine for fear of not fulfilling the supplier stereotype. When the leave is paid, 80% of the parents make use of it, a figure that falls to 9.4% if it implies a decrease in income. Only 4% of Spaniards with a small child reduce their working day compared to 25% of women.

Nobody remembers the elderly

Durán strongly opposes extrapolating Danish data to Spain for one reason: the elderly. "Everyone looks at children, but in Spain we have few children and many old people," says Durán. A new type of motherhood arises that makes women become mothers of their parents.

“Women who take care of older people are usually out of the labour market and do not take them into account,” says Durán

In this sense, Durán criticizes the bias of many surveys. "Women who care for very old people are usually, by force or not, outside the labour market. If you only measure those who are employed, you are measuring those who have been able to make it compatible, even if it is wrong, and not those who abandoned it because it was incompatible," she adds: "The true and worst discrimination is in those that have not triumphed. We would have to ask them."

To ask the less favoured, one would have to travel far from Denmark and Spain. A UN report published last month has studied the relationship between poverty and gender. One of its conclusions is that women between 25 and 34 years of age, in reproductive and working age, are 22% more likely to live in extreme poverty compared to their peers.

The ideal employee: a man without a family

Jury criticizes the way the labour market operates. "It is very much focused on the ideal employee, who is a man with no family responsibility and always available. In Spain, in addition, we have very long working days; the reduction protects against unemployment and helps to conciliate this, but reduces the salary and penalizes the career".

"Employers and the public administrations are not sensitive with this issue", says Pérez Sedeño. "The other day I discovered that a female researcher, when evaluating whether she should continue the contract or be promoted, we did not take into account her maternity leave during which she could not perform the same".

Durán also attacks the current economic system which, based on the idea of competition, "forces in the short-term specialization of roles instead of equal distribution". Even so it is a system that, "if everything goes well", can be an "effective and rational" option for the couple. The sociologist believes that the strategy is profitable, "especially for the male" and assuming that "solidarity in the couple works forever." However, "it is negative for women who assume the cost of moving away from the labour market. In case of divorce, illness or unemployment, it is risky, especially for women."

Non-transferable leaves towards a redefinition of wealth

The interviewees for this article agree that inequality in care has no easy solution. Jurado defends non-transferable maternity an paternity leave: "If we do not want the traditional model where the woman raises and the man provides, and it seems that we do not want it because during the crisis women continued working, the right to take care should be non-transferable. The responsibility is for both."

“The care must be redistributed with fairness, just as we feel the obligation to redistribute the money,” says Durán

This measure has been applied in Iceland, the country that saw the first feminist strike in 1975. There, parents have 13 weeks of exclusive leave, which can be used or lost, and now more than 90% use them. This need for greater involvement on the part of men is not only a relief for mothers, since children develop their cognitive abilities better.

"As long as we continue with the idea that wealth is money, care will be interpreted as a cost," says Durán, who invites us to transform our ideas about what success is. "In reality, care is a huge wealth and it has to be fairly redistributed, just as we now feel the obligation to redistribute the monetary”.

If this idea of wealth does not change, in her opinion, there will be no solution. "Then it's a matter of power and care is given to those who do not have the power to get rid of it, which are women, especially older women." Regardless of what biologists, psychologists and sociologists may say, changing diapers does not hurt.

An educational and social, not natural inequality

At this point there remains a key question: why do women care for children more than men? Is that so by nature? There are several possible explanations: that social and cultural norms favour this inequality; that they have a greater natural predisposition towards care-giving; or a combination of both.

“The ideas about natural predisposition imply a very deterministic conception of biology that I do not share," Carmen Fernández Montraveta, professor of Psychobiology at the Autonomous University of Madrid, told Sinc. "We build ourselves as organisms in a social environmental context and plasticity is one of our footprints as a species", reflects this specialist in animal behaviour and evolutionary ecology.

Egholt's study confirms that the environment is essential. "Women who grew up in traditional families with a male provider and a female housewife suffer greater penalties when they become mothers," she says. At the same time, "there is no relationship with the labour history of the paternal grandparents". This leads to the conclusion that the key lies in the "gender identity formed during childhood" of women.

Durán explains that the biological impact was very strong in the past, when families had many children, as happens in other parts of the world. "In those countries there is a really strong association between being a human female and caring for children, but here now the birth rate is programmed and scarce, and life expectancy is high, so the effect is small. The rest is all culture." With 1.3 children per Spanish woman and 85 years of life expectancy, there are few years in which the upbringing of children is a limitation.

"Many animal species take care of the progeny as a group. The inequality in the distribution of care is educational and social, not natural ", settles Pérez Sedeño.

After a historical minimum of 5,273 cases in 2016, cases have quadrupled in 2017 with more than 20,000 people affected and 35 deaths. Moreover, 15 European countries, including the United Kingdom, had large outbreaks; Romania, Italy and Ukraine were the territories with the highest incidence.

After a historical minimum of 5,273 cases in 2016, cases have quadrupled in 2017 with more than 20,000 people affected and 35 deaths

However, it is a health problem not only for Europe, but for the rest of the world. Countries from other continents (China, Ethiopia, India, Indonesia, Lao People's Democratic Republic, Mongolia, Philippines, Nigeria, Sri Lanka, Sudan, Thailand, and Vietnam, among others) also reported outbreaks of measles between 2016 and 2017.

In Spain, in recent years there have been between 100 and 300 cases as a major upturn - except in 2011, when the last major outbreak occurred with 3,518 cases (about 30,000 in Europe) -. Although it is not a negligible number, within the European scenario the country moves in a relatively low range of cases. In 2017 there were 160 cases reported.

"This is because in our country there are high rates of vaccination coverage with the triple viral (measles, rubella and mumps): 96.7% with the first dose (recommended between 12-15 months of life) and 94, 7% with the second dose (between 2-4 years of age), "explains Roi Piñeiro, coordinator of the consultation of advice on vaccines at the General Hospital of Villalba, to Sinc.

This pathology occurs with epidemic outbreaks with a rate of infection in unvaccinated people close to 100%. If we have close contact with a case and we are not vaccinated, it is almost impossible not to get infected. That is, the options are to be vaccinated or infected through the virus.

When an affected person appears, whether or not a significant outbreak occurs depends directly on the vaccination rate of the nearby population and the preventive measures taken. Air and contact isolation is necessary, since it is transmitted through direct contact with the respiratory secretions of infected people and through the air.

A step back in eradication

Measles is a disease candidate for elimination since its reservoir is exclusively human, there is an effective and cheap vaccine that provides lasting immunity, the virus barely survives in the environment and there are sufficient diagnostic techniques to detect the infection.

While at the beginning of the 21st century there were almost a million dead, in 2016 the number has fallen below 100,000

According to the WHO data, in 1980 - before the use of the vaccine became widespread - it caused about 2.6 million deaths per year. From 1990 to 2008 much progress was made in its eradication; however, since then outbreaks have been declared worldwide.

While at the beginning of the 21st century there were almost a million dead, in 2016 the number has fallen below 100,000. "In just over 15 years deaths have been reduced by 84%," declares José María Bayas, former president of the Spanish Vaccination Association (AEV) and current member of the medical department of GlaxoSmithKline Spain, to Sinc. "This has meant saving 20 million lives thanks to vaccines."

The expert reveals how this improvement can suppose, on the other hand, a loss of respect for the disease and the propagation of unscientific theories. "When the associated drama is lost, the idea is spread that it is better to suffer measles than to get vaccinated because this provides stronger immunity," he says.

"And it's true, but first you have to survive," says Bayas. "If you die, you no longer get this immunity. It is important to note that measles, in addition to killing, can have serious consequences, so the balance of immunity can also be negative. "

The first symptom of measles is usually high fever, which lasts between 4 and 7 days. In the initial phase, the patient may have nasal congestion, cough, watery and red eyes and small white spots on the inside of the cheeks. After several days a rash appears, usually on the face and upper neck, which lasts about 3 days and ends up affecting hands and feet.

The most important complications are blindness, encephalitis (infection accompanied by cerebral edema), severe diarrhea (which can cause dehydration), as well as severe ear and respiratory infections, such as pneumonia. They are more frequent in children under 5 and in those over 30.

Before the use of the vaccine became widespread, measles caused about 2.6 million deaths per year. / Fotolia

The risk of suffering measles in the 21st century

Early diagnosis is essential to initiate the isolation of the patient and thus prevent transmission. However, younger doctors hardly know the disease because today it is not normal to see it in the consulting rooms.

"On the one hand, pediatricians stopped recognizing measles, because it should be in an eradication phase," says Piñeiro, who is secretary of the Spanish Society of Pediatric Infectious Diseases. "But on the other hand, a small part of the population loses fear of the disease and, given the low prevalence, considers it a good option not to vaccinate their children."

"Parents who decide not to vaccinate their children obviously love their children, but they handle the wrong information," says José María Bayas. "They have been duped by unscrupulous people. Not vaccinating a child of measles while this disease exists is a hoax; sooner or later you will end up finding the virus."

Parents who decide not to vaccinate their children obviously love their children, but they handle the wrong information

Within the group of parents who do not vaccinate their children there are those who even organize the so-called 'measles party'. When one of the children acquires the disease, they invite the rest of the unvaccinated from the community to a kind of birthday celebration, so that they all go through the viral process together.

To avoid a resurgence of this disease, immunization systems must be strengthened, but also anti-vaccines movements must be fought. "The Internet is a wonderful tool, but it can also do a lot of damage. Many people are not capable of discriminating between serious and rigorous information and that which is not, "says Bayas.

Thus, although the unfounded rumor published 20 years ago about a possible link between the MMR vaccine (measles, rubella and mumps) and autism has been widely discredited, the fear it created damaged the trust of certain groups. "It is tremendous that characters like Trump support these ideas discarded as they involve new outbreaks," qualifies the expert.

Why it is so important to vaccinate children

For those who argue that the vaccine itself can also cause encephalitis, Piñeiro states that the prevalence is less than one per million children vaccinated. "And not always proven, because most are diagnosed with encephalitis of unknown cause, which are finally attributed to the vaccine by a casual relation (temporary), but not necessarily causal."

It's easy to make numbers. For every child allegedly affected by encephalitis due to the vaccine, at least 333 children will have been saved and at least 1,000 cases of encephalitis avoided, not mentioning controlling the disease and preventing an outbreak that affects all a population. And that in the first world. In developing countries, the measles mortality rate reaches up to 10% of cases.

In Spain, at the moment the coverage is good, so nobody considers the obligatory nature of the vaccination calendar as France or Italy have started. But what makes us think that we are vaccinated against anti-vaccines?

In Spain, at the moment the coverage is good, so nobody considers the obligatory nature of the vaccination calendar

"Strategies must be implemented before the outbreaks arrive, and to improve communication with parents from empathy, respect and affection. The easy thing is to attack a family that is reluctant to vaccinate," says Piñeiro. "The challenge is to overcome their phobias and immunize their children. That must be the goal, and we're not going to get it by forcing them to vaccinate."

Another option would be to admonish economically, as in Australia. This country accepts non-vaccination in exchange for withdrawing tax benefits to parents. Interestingly, there vaccination coverage is greater than 99%.

The measles virus does not rest. He is always looking for his next victim. The best thing is to be vaccinated and not check it in our own body. "The medicine is not an exact science, but the mathematics do not fail and they are asking us to shout that we vaccinate ourselves, all", concludes Roi Piñeiro.

Vaccines do work

Vaccines have proven to be the most cost-effective measure used in public health. In Spain the vaccination program began in 1963, the year in which the mass vaccination with the oral polio vaccine (in Spanish, VPO) was carried out.

In 1965 vaccines against diphtheria, tetanus and whooping cough (in Spanish, DTP) were incorporated; in 1978 the measles vaccine was incorporated and in 1981 the use of the triple virus against measles, rubella and mumps (in Spanish, SRP) was generalized.

In the nineties vaccines against hepatitis B and Haemophilusinfluenzae type b have been incorporated. In 2000, the conjugate vaccine against meningococcal type C was incorporated.

In 2005, the varicella vaccine was introduced in susceptible adolescents between 10-14 years of age and in 2008 vaccination campaigns against the human papillomavirus (in Spanish, HPV) began in a single cohort of girls between 11 and 14 years old, to be decided in each autonomous community.

The giant of the Goya Awards

En Miguel Joaquín Eleizegui, a man with a peculiarity: he came to measure 2.42 meters, lived in the small municipality of Altzo, in Guipuzcoa, Basque Country. The story of the Giant of Altzo, as he was nicknamed, is narrated in the film Handia (2017), winner of ten Goya Awards, among them, best original script.

'Handia', 2017.

Uno One of the scriptwriters, José María Goenaga, contacted the Spanish Association of People Affected by Acromegaly three years ago. Its president, Raquel Ciriza, tells us that she provided information about the disease when the movie was being documented. According to Ciriza, the scriptwriter told her not to expect to see a reflection of reality since, although the film was based on a real character, it was fiction.

In her opinion, the final result is positive because it shows the suffering of the patient, who in the film receives no treatment to control his illness, and the treatment they give him for being different, turning him into a claim to do business.

The acromegaly of the protagonist of 'Handia' is produced by an excess of secretion of growth hormone

What does not just agree with reality is that the character began to increase in size past adolescence. Acromegaly is an endocrine disease that is caused by an excess of growth hormone secretion due, in most cases, to the presence of a benign tumor in the pituitary, a gland in the cranial base.

The disease causes enlargement of tissues, organs and extremities, such as hands and feet. "If it happens to you in adulthood, you have acromegaly and you do not have to be taller than normal. However, if the excess of the hormone occurs in childhood or adolescence, gigantism is talked about, as it grows high because the cartilage has not finished closing", explains Ciriza to Sinc. In the case of the Altzo Giant, the disease had to start earlier than the film narrates.

Other mythical acromegaly giants of the big screen were the fearsome 'Shark' of James Bond, played by the actor Richard Kiel, and the loyal Fezzik of The Princess Bride (1987), which represented André René Roussimoff, a professional wrestler.

Achondroplasia

The low size is not funny

At the opposite pole are people suffering achondroplasia, a bone disease in which cartilage growth is interrupted and causes shorter limbs and short stature, among other symptoms. Recent films like Summer 1993 (2017) and Three Billboards Outside Ebbing, Missouri (2017) include supporting roles with this rare pathology.

Three Billboards Outside Ebbing, Missouri (2017)

In an article published in The Guardian, Eva Squire, who also has the ailment, denounces the discriminatory and comical treatment that is given to the character of Three Billboards Outside Ebbing, Missouri played by Peter Dinklage. "In the movies, it is still impossible to find complex, serious characters who face conflicts derived or not from their dwarfism. They appear as extras to put a comical touch or offer a contrast”, spokespeople of the Spanish Fundación ALPE Achondroplasia foundation explain to Sinc.

“ It is still impossible to find complex, serious characters who face conflicts derived or not from their dwarfism”, patients complain

For these patients, the only exception is Short Cuts (2003). Also played by Dinklage - well known for his participation in Game of Thrones - the film realistically narrates what it is like to live with the disease. "Dinklage is a model for us. We admire him and we value him very much. He has achieved what no actor with achondroplasia or other forms of dwarfism had achieved before: triumph for his quality as an actor", they emphasize.

In Willow (1988) or Simon Birch (1998) the protagonists also present forms of dwarfism, although not achondroplasia. From ALPE they admit a small evolution, especially in television. "We accomplished that in the 1,2,3 TV Show, the regular appearance of Tati and Quieti, two people with achondroplasia who acted as unruly children of a man dressed as a woman, was suspended," they stress.

Beyond Stephen Hawking

ALS - amyotrophic lateral sclerosis - is another rare disease that has appeared on the big screen. The theory of everything (2014) tells the life of Stephen Hawking, the famous physicist who was diagnosed with the neuromuscular disease when he was 21 years old.

Based on the memories of his ex-wife, Jane Hawking, the film does not realistically reflect what life is like for a patient, according to Rosa María Sanz, manager of the Spanish ALS Association."It's even harder and the progression of the disease, in general, much faster," she says.

This disease of the central nervous system is characterized by a progressive degeneration of motor neurons in the cerebral cortex, brainstem and spinal cord. The consequence is a muscle weakness that can progress to paralysis.

In the book Brief history of my life (2014) Hawking takes stock of his career and tells how he has faced the ALS. "Why did it have to happen to me? At that time I thought that my life was over and that I would never develop the potential I felt I had. However, now, fifty years later, I can be satisfied with my life," he wrote.

According to Sanz, the scientist is a special case, which does not represent the majority of patients, and the film is not focused on the ALS and its evolution, but on his specific case. "It is necessary to see how a patient is confronted with the acceptance of the disease and how he is living the duels of the successive losses that he is suffering. Nor are family or personal decisions made regarding death and life seen in the movie," she maintains.

“I know I'm not a normal ten-year-old kid”

In Wonder (2017), Julia Roberts and Owen Wilson play the parents of August "Auggie" Pullman, a child with Treacher Collins syndrome. The film is based on the homonymous book written by Raquel Jaramillo Palacio. "I know I'm not a normal ten-year-old," Auggie says in the novel. Both he and the other characters in the play are fictional.

'Wonder', 2017

The Treacher Collins syndrome is a congenital craniofacial malformation characterized mainly by the absence of cheekbones, ears, cleft palate, and digestive and respiratory problems. In the book Auggie talks about the twenty-seven operations practiced with him, something quite realistic. However, according to Marisa Gil, president of the National Treacher Collins Syndrome Association, both the novel and the film soften reality.

In ‘Wonder’ the vision of parents and how they reconcile work and family with life in hospitals is missing

“It is an adaptation that does not reflect the real life of a child with the syndrome, since it is not normal for parents to allow themselves the luxury of stopping their jobs to teach their child, to start school in 5th grade, or much less wear a helmet," she says.

To avoid the looks and whispers of others, Auggie used for several years an astronaut helmet a friend of his sister has given him. In the book the narrator starts being the child but then so are his sister and his friends, which allows knowing their points of view. However, the vision of the parents does not appear.

"We need to see how his parents see it and how they try to reconcile work and family with hospitals," says Gil. What seems positive for the visibility of the disease is that actors such as Julia Roberts and Owen Wilson participate in the film.

Patients and writers

Except in the case of Stephen Hawking, the writers or directors of the books and films we have mentioned are not patients, something that changes with The legacy of Marie Schlau (2014). It is a collective novel written by 17 authors, almost all women, and most with Friedreich's ataxia. The funds raised with the sale of the book are to research the ailment.

Friedreich's ataxia is a hereditary neurodegenerative disease that produces progressive lesions in the nervous system and causes muscle weakness, speech problems and heart disease, among other symptoms. It was the philologist and patient María Blasco Gamarra who had the idea of this collective work.

"I thought that in different parts of the world there should be people with the same disease and a common goal: investing in biomedical research to find some effective treatment," she says. She contacted the BabelFAmily association, which promoted the project and translated the text altruistically. The authors of the novel come from Spain, Australia, the United States, Mexico, Portugal, the United Kingdom and South Africa. One of them, Nicola Batty, died before it was published.

The protagonist of the book, the young Marie Schlau, suffered from the disease in the first half of the nineteenth century, before it is diagnosed. Although it is a work of fiction, real characters appear as the neurologist Nikolaus Friedrich, who described the disease in 1863. In the novel, Marie transmits the disease to her great-great-grandson Ron. "I am a prisoner of a genetic code that feeds on my descendants," the young woman laments in the book.

Although sales are not being high, Blasco Gamarra is optimistic because the proceeds fund research projects. "The beneficiaries are not just us, the patients, but all of humanity," she stresses.

The therapy of a mother

After several years without knowing what happened to her son, and once autism and attention deficit and hyperactivity disorder (which her other daughter suffered), had been discarded, a geneticist solved the mystery: the boy suffered from Ehlers-Danlos syndrome of vascular type. "The diagnosis was devastating," recalls Deborah A. Roach.

This rare disease encompasses a group of incurable hereditary disorders characterized by extremely lax joints, very elastic skin where bruises easily form and blood vessels that are easily damaged. Patients who suffer from vascular syndrome, such as Deborah's child, have a very high chance of a rupture of an organ or a major blood vessel.

After turning to her son, talking to other patients and learning everything about the syndrome, Deborah went to a therapist. "I wanted to make sure I was not so caught up in the diagnosis that I forgot to live," she says. As a therapy, she decided to write a fiction book in which the disease appeared: Rarity (2015).

The novel is a story of adolescent love in which the protagonists fight against many obstacles, among them, the syndrome. The reception by the patients was very good, although for some of them it was like a jug of cold water. "They know the data - a short life expectancy - but they try to hide that information in the deepest recesses of their minds", explains the writer.

Trust patients

Journalist Jennifer Latson remembers very well when it was the first time she heard about the Williams syndrome: in a news story. In it, patients were described as biologically incapable of distrusting. "At first I was surprised to hear that this was considered a disorder because it seemed like something we should celebrate, not cure," he acknowledges.

“Eli is the only teenager I've met who told his mother several times a day: 'I love you mom, you're the best”

Cuando When she investigated the genetic disease, she knew the most serious symptoms that accompany it, such as cardiovascular problems, some type of mental retardation or long facial features. She met Eli D'Angelo, who had the syndrome and his mother Gayle, and followed them closely for three years, when Eli was between twelve and fifteen years old. That period was captured in the book The boy who loved too much (2017).

"Eli is the only teenager I've met who told his mother several times a day: 'I love you mom, you're the best,'" says the journalist. The patient associations thanked her for dedicating the book to the syndrome and using a language accessible to the general public, avoiding medical technicalities.

The novel tells the difficult decision of the mother, who must choose between protecting her son from the rest of the world to avoid suffering or give him more freedom, despite the setbacks that arise. A tessitura that is also reflected in other works and well known to the mothers and fathers of any child with a disease. Thanks to film and literature, these families, so different and similar to each other, feel less and less rare.

The film festival of rare diseases

The Disorder Festival. / EricaDerrickson

In this festival there are no losers. Everyone wins, above all, patients. Its founders, Bo Bigelow and Daniel DeFabio, came up with the idea after recording two films about the rare diseases their children suffered. "We wanted to create a festival where we could show our films, select others and bring together an audience that includes activists, researchers, doctors and pharmaceutical companies," summarizes Bigelow to Sinc.

Disorder: TheRareDisease Film Festival was held in Cambridge (USA) last October and brought thirty films together, among them the Spanish Cuerdas (Strings) (2013), which in 2014 won the Goya Award for best short animation. Other countries represented were Poland, Iran, Canada, the United States and the United Kingdom. The organizers want to reach 7,000 films, as many as rare diseases and to accomplish this goal, they put directors in contact with patients who want to see their disease on the screen.

For this, the human milk banks were created, in charge of collecting, processing, storing and dispersing this biological product with all the guarantees. Its purpose is to solve the feeding problems of the newborn until his mother can breastfeed.

"It's one more pillar of support for breastfeeding. It provides milk from other women to those high-risk newborns that still do not have their mother's or when the mother does not have enough milk”, Nadia Raquel García, coordinator of the Regional Breast Milk Bank of the Community of Madrid, located in the 12 de Octubre Hospital.

In fact, several studies point out that in premature infants the artificial formula supposes an increase in pathologies such as necrotizing enterocolitis (NEC), an intestinal disorder typical of premature babies and other vulnerable newborns.

Several studies point out that in premature infants the artificial formula supposes an increase in pathologies

Moreover, in 2001 the World Health Organization (WHO) stressed that human milk banks are "one of the best health strategies in the reduction of infant mortality and protection of breastfeeding."

Since breast milk is a scarce resource, it is essential to prioritize those who will be recipients and adjust the characteristics of the donated milk to those of the child who receives it, always taking into account availability.

Thus, in the first days we try to give newborns of maximum risk (with less than 1,000 grams of weight or less than 28 weeks of gestational age) milk from donors whose children had at the time of extracting that milk.

"If they were also mothers of premature children, it is even more appropriate," says García, who is also president of the Spanish Association of Human Milk Banks (AEBLH, Asociación Española de Bancos de Leche Humana), created in 2008. "However, many times we cannot adjust so much and we have to deliver milk with longer life of the child."

For very premature or sick newborns, the first weeks of life represent a critical period for the development of pathologies related to immunity. Feeding with breast milk and donated from birth helps to develop resistance "more adequately." Likewise, the greater the volume of maternal or donated milk they receive during the admission, the greater the beneficial impact on these children at risk.

"It is important to start with human milk as soon as possible since it favors mobilization and tolerance, intestinal maturation and colonization by beneficial germs for the vulnerable premature infant. The milk of the mother herself is preferable, but if it is not available, the donation is the best option, "clarifies Sinc Marta Cabrera, neonatologist at the Hospital Universitario La Paz.

How to be a milk donor

For very premature or sick newborns, the first weeks of life represent a critical period for the development of pathologies related to immunity

In the absence of global data in Spain for 2017, in 2016, 1,565 donors were registered, representing a total volume of 7,449.16 liters of milk and an average donation of 4.47 liters / donor. In the 43 receiving hospitals, 2,281 neonates, mostly preterm with very low birth weight, benefited from these donations.

An increase of activity every year is also evident. Since 2009, the number of donors has increased from 175 to those 1,565 donors. In the same way, donations have gone from 1,143.9 liters donated to the 7,449.16. The number of receivers has also increased from 333 to 2,281.

But what should a woman interested in being a donor do? They should contact the nearest milk bank, where they will be informed of the donation process. Basically, the candidates must be women who are nursing, willing to have their milk extracted and enjoying good health.

It is convenient to establish the breastfeeding of one´s own child well during the first month of life before starting to donate. "It is useful to include it in the daily routine. Sometimes donors draw milk from one breast while they are breastfeeding their son from the other, "says Cabrera, who has been running the regional bank's satellite center in La Paz for months.

The main thing is to prevent milk from being contaminated by a lack of hygiene or improper storage. The extracted volume changes a lot from one woman to another. The nutritional composition of the milk of each woman is also variable, which also changes as the time of lactation increases. Thus, this food is classified according to the age of the babies of the donor mothers: colostrum (up to 7 days of life), transition (from 7 to 14 days) and maturity (more than 14 days).

"Breast milk banks only make sense in a society that supports breastfeeding and that has a percentage of women who breastfeed their children satisfactorily and are willing to altruistically give their surplus to milk banks," says Nadia Garcia.

The bank she is managing has increased its activity and, in 2017, it accepted 236 women as donors, with an average donation of 7.18 liters and 612 receiving children who benefited. Each drop is important: 20 milliliters can be useful for a very premature child for several days.

When a milk bank is established in a neonatal unit, the rate of breastfeeding itself increases

More than a century of milk banks

The first milk bank was created in 1900, in Vienna. Later, milk banks were opened in Boston (1910), Buenos Aires (1921) and Rio de Janeiro (1943). Since then, there are numerous centers in Europe, the USA, Australia, Central America and South America.

With the emergence of HIV and the development of milk formulas for preterm infants, the use of milk banks decreased during the 1980s. However, they are now widespread throughout the world and contribute to a greater success of breastfeeding. According to Garcia, "the presence of a milk bank makes society consider it a very valuable asset".

When a milk bank is established in a neonatal unit, the rate of breastfeeding itself increases. According to the experts, this occurs because it creates an awareness of breastfeeding and human milk that affects the parents.

Likewise, its existence encourages research and minimizes milk contamination and deterioration. Moreover, experience in other countries has shown that the establishment of a breast milk bank increases breastfeeding rates in the region where it has been implanted.

In Spain, the history of milk banks is very short. The first center was founded in Palma de Mallorca in 2001; Later, in 2007, the first one located on the peninsula was inaugurated: the Hospital 12 de Octubre, in Madrid. Last December milk banks celebrated their tenth anniversary, which will be held next March with all the heads of regional banks and satellite centers.

At present, Spain already has 14 institutions in the Balearic Islands, Madrid, Valencia, Granada, Aragon, Barcelona, Extremadura, Castilla y León, Vigo, Santiago de Compostela, Seville, Asturias, Basque Country and Cantabria. Everything seems to indicate that the number will continue to grow. There are projects to create new banks in Córdoba, Las Palmas de Gran Canaria and Tenerife.

An act of generosity with society

Donor mothers are making an impressive altruistic effort. "They have all the merit of the world. They are mothers who are breastfeeding their children, with what that means and, in addition, they make the decision to donate. It is an act of enormous generosity with society," says Marta Cabrera.

Donor mothers are making an impressive altruistic effort. It is an act of enormous generosity with society

Hence, knowledge must be increased and the process facilitated as much as possible. It is important that mothers have other centers - in addition to the regional bank - as this optimizes donation from a geographical point of view.

In Madrid, the centers that have been accredited to receive raw milk from donor mothers are Severo Ochoa in Leganés, Puerta del Hierro and La Paz. To attract donors, the Hospital 12 de Octubre, Severo Ochoa and La Paz.

The long-term purpose of milk banks is to try to make all children who meet criteria and do not receive donated milk do so. "The ideal would be that no newborn baby admitted took formula milk," says Nadia García.

In this sense, both experts conclude that there is still a long way to go in Spain for donated breast milk to be the standard substitute for the mother's milk when it is not available. But the future is encouraging. Maybe in a few years it will reach all the neonates that need it.

Asociación española de Bancos de Leche Humana (AEBLH) (Spanish Human Milk Association)

Asociación Europea de Bancos de Leche (EMBA) (European Milk Banks Association)

The International Society for Research in Human Milk and Lactation.

Lactation Committee of the Spanish Pediatric Association: includes recommendations, scientific documentation of interest, legislation and forums for professionals and mothers.

Medications and lactation. Website maintained by the

Asociación para la Promoción e Investigación de la Lactancia Materna (Association for the Promotion and Research of Breastfeeding) that allows to know the compatibility between the consumption of medicines and other products and breastfeeding.

La Liga de la Leche (Spain) (The Milk League)

Alianza Mundial a favor de la Lactancia Materna. (World Alliance in favor of breastfeeding)

Large corporations such as Facebook and Google receive every year criticism for their gender policies. In fact, Google acknowledged in its latest internal report on diversity that 70% of its employees are men. The TechLeavers study, published in 2017, analyzes the reasons why many women leave this industry, which is criticized, among other issues, for a sexist and humiliating treatment.

However, there are women who dare to undertake in this world dominated by men. They are engineers and computer science experts of the millennial generation, who have developed breakthrough technologies in fields such as artificial intelligence, micro fluidic devices, and the Internet of things or data analysis.

Luz Rello

The linguist who became a businesswoman to fight dyslexia

This linguist and doctor in computer science works as a researcher at the Carnegie Mellon University, in Pittsburgh (Pennsylvania). In 2015, she founded the social company ChangeDyslexia in Barcelona. "My goal," – she tells Sinc– "is to develop tools to help the detection and treatment of dyslexia, in cooperation with speech therapists, pediatric psychologists, educational psychologists and teachers."

The desire of Luz Rello (Sigüenza, Guadalajara, 1984) to improve the lives of people with dyslexia –starting with early detection– has a personal origin, since she suffered this problem being a child.

Luz Rello, founder and CEO of Change Dyslexia. / Julio Gonzalo

This entrepreneur, who lives between Pittsburgh and Spain, is not thrown back by challenges; quite the opposite. "I decided to study linguistics to challenge my problems with language, and investigate in dyslexia because I can contribute with my own experience," she says.

"The research we do at Carnegie Mellon University –she explains– is later integrated in applications that we license to ChangeDyslexia". The CEO says that until now her team has developed two applications. The first is called Dytective, a free test based on artificial intelligence, which takes 15 minutes to analyze more than 200 variables and reports whether there is a risk of dyslexia with 90% accuracy. "It has been validated scientifically with 10,000 individuals and is intended for families, professionals and schools," she stresses.

After completing the test, the user receives a detailed report with the results, "which is not equivalent to a diagnosis", explains Rello. "From ChangeDyslexia we always say that it is a mere indicator of risk; then you have to go to a professional to make a final diagnosis".

"It's easier to ask for money from venture capital funds if you're a man, I think they do not need to justify that much," says Rello

The other application, DytectiveU, is a tool helping overcome dyslexia. "It is a videogame with exercises that are adapted according to the user´s weaknesses and strengths to improve reading, writing and understanding of texts in the most personalized and rigorous possible way," she explains.

The tool chooses which of the more than scientifically validated 35,000 exercises are the most appropriate, based on the skills that need to be reinforced. According to Rello, "playing 15 minutes a day you can see the evolution of your reading and writing skills in the reports generated by the tool and help to get that rough diamond that every child with dyslexia has inside".

ChangeDyslexia has a team of ten people. In addition, they work with volunteers to validate the different applications "It is a very vocational company because many of the people in the group have this disorder," says the CEO.

Her plans now are to make her company sustainable. So far, she has managed to finance the company thanks to awards, like the Princesa de Girona in the social category, Innovators Under 35 of the MIT Technology Review, and the European Young Researcher Award and also with money coming from her own pocket. Now she hopes to accomplish profitability with the sales of DytectiveU.

At the moment, she is developing, together with Maria Rauschenberger, a researcher of her team, a universal dyslexia detector that will not use linguistic elements, but visual ones and that will be based on artificial intelligence. "It is a very ambitious project –she stresses– but in research, if you do not dream, you are left behind".

Regarding the difficulties to undertake, she says that the main problem she has found has been seeking funding. "It's easier to ask for money from venture capital funds if you're a man, I think they do not need to justify that much," she concludes.

Alicia Asín

Sensors that control volcanoes and plantations

Eleven years ago, Alicia Asín (Zaragoza, 1982), computer engineer, founded Libelium together with her partner David Gascón. The company's flagship product, which was born as a spin-off from the University of Zaragoza, is its Waspmote hardware platform, capable of wirelessly monitoring any environmental parameter and sending information to the Internet.

"This technology –she explains to Sinc– incorporates 120 sensors that can be used for the most varied applications, like the detection of fires, the control of the air and water quality or the creation of parking systems that inform the driver of the availability of seats parking lots.”

Alicia Asín, co-founder and CEO of Libelium, after collecting the Jaime I prize. / Diario de Levante

Among the most outstanding projects of this company from Aragón is the predictive control of eruptions of the Masaya volcano of Nicaragua, with the aim of establishing warning systems for the evacuation of the population. In Indonesia, the world´s third largest producer of cocoa from family plantations with few resources, Libelium has carried out a plan to improve crops through the temperature, humidity and solar radiation measurements, which allows acting and preventing infections and stop deforestation.

We started with 3,000 Euros and three people and we closed 2017 with a turnover of six million Euros, 60 people and an investment in R&D of 1.7 million Euros

In addition, the Libelium platform was used after the Fukushima nuclear accident to measure radioactive contamination, and has traveled to space on the ArduSat satellite.

When Asín and Gascón created the company, they were 24 years old. "We started with 3,000 Euros and three people and we closed 2017 with a turnover of six million Euros, 60 people on our payroll and an investment in R&D of 1.7 million Euros. Around 90% of our sales come from exports to more than 120 countries," declares the CEO.

Last year, this manager received the Jaime I Award, in the Entrepreneur category. Asín believes that it is necessary to make women who work in technology more visible also for the market itself. "Right now, we get very few computer curricula because there has been a reduction in women who decide to study these careers," she declares.

However, she points out that the Libelium management committee is composed of three women and three men. "This is merely a coincidence, because we focus on the talent, not the gender. But if you apply policies that reflect that you really believe in equal opportunities, that you favor conciliation and put talent above anything else, it is normal to reach this equality".

Rosa Monge

Life in a plastic chip

The innovation developed by Rosa Monge (Zaragoza, 1984) is contained in a plastic chip that recreates a biomimicry environment, that is, the closest possible environment to the one that cells have when they are inside a living being, but in the laboratory.

Chosen among Spain´s top 10 talents under 35 by MIT TechnologyReview, this industrial engineer is R&D manager and co-founder of Beonchip, a spinoff of the University of Zaragoza, in whose Applied Mechanics and Bioengineering research group of Aragón-I3A Engineering Research Institute the idea was forged. The company started operating in February 2016.

Rosa Monge, R&D manager and co-founder of Beonchip. / Courtesy of the company

According to the manager, the micro fluidics devices for cell cultures that she has developed "are like a kind of Petri dish, but more advanced. By their design, they allow reproducing the environment in which cells live inside the body and can be used for experimentation and drug testing without the need to use animals."

The interior design of these devices "allows placing the cells in the same way they would be in a living being: cell structures in 2D, 3D, inter-cell communications, etc. You lose all that in a Petri dish," she adds.

In these plastic chips –she explains– "several wells and channels divided by membranes are included, depending on the environment you want to reproduce."

"Our chips can be used to test drugs without the need to use animals," explains Monge

The organs that the company recreates with its technology depend on the requirements of the scientist or the pharmaceutical company that places the order. The structures in two or three dimensions are repeated in different parts of the body, such as the kidney or blood vessels. "Depending on the cell type used by the researcher, we will reproduce one environment or another." In addition –she highlights– "we have successfully imitated the cellular structures of a type of brain cancer called glioblastoma multiforme (GBM) and those of metastasis."

Beonchip is now participating in several European projects. One of them seeks the development of a platform in which to reproduce the environment of bone cells to test drugs against osteoporosis. Another outstanding initiative is the development of a heart on a chip.

Among the plans of this entrepreneur is to make the leap to the European and the US market. All this, despite the fact that the company has only five employees on its payroll –four female engineers– and one financial and organization manager.

Monge points out that the fact of having four female technology specialists in the team has not been deliberate. "We hired them for their talent, but I'm happy. I think it's very important that girls have models in these fields and that they see it as a natural option for their future careers."

Montse Medina

Her company knows what you want to buy

In 2011, this aeronautical engineer stopped her PhD studies in computational mathematics at Stanford University to create Jetlore, a digital marketing company that uses algorithms and data analysis to create customized content for companies such as eBay, PayPal, Uniqlo and Inditex. The firm, based in San Mateo, California, has recently been chosen as one of the fastest growing start-ups in Silicon Valley.

In addition to co-founder, Montse Medina (Valencia, 1984), is the operations manager of the company. As she explains to Sinc, "through the use of artificial intelligence, the Jetlore software associates the behavior of consumers with the attributes of a product catalog in real time. Attributes include elements such as size, color, fit and style preferences, brands or favorite materials."

Montse Medina, co-founder and director of operations at Jetlore. / Courtesy of the company

Then –she adds– "the platform generates customized content in e-mails, websites and other channels and shows only the products that are most relevant to each user: what we do is extract the valuable information and remove the noise," she stresses.

"My goal is to place my firm among the best software companies in the world," says Medina

Medina indicates that this structured information has allowed major retailers and large e-commerce brands using their technology to increase their sales between 30% and 80%.

Jetlore, which has a staff of 40 people, almost all computer engineers and experts in data science, has managed to raise 10.6 million US dollar (about 9 million Euros) from venture capital. "We are going to use this financing to grow faster," says the manager.

Like Rosa Monge, Medina has been selected among the Spain´s top 10 talents under 35 by MIT TechnologyReview. In addition, she has been a finalist in the Stevie Awards for Women in Business, one of the world´s most prestigious awards that recognize female entrepreneurs and executives and the organizations they lead.

Montse Medina says that being a woman has not represented any inconvenience in her career, although she admits that investors usually prefer to deal with men. "But I do not let these things distract me, I continue doing my task, which is to place my firm among the best software companies in the world," she concludes.

Mental illness makes it more difficult for the patient to complete the treatment against the tumor

“I usually say to my patients who have never been sick,: 'This will be the hardest thing you've done in your life.' Imagine what it means for someone who is already sick", Jennifer Lycette, who works at the OHSU Knight Cancer Institute and Columbia Memorial Hospital (USA), tells Sinc.

In an article published in The New England Journal of Medicine, Lycette describes the challenge of treating this 50-year-old woman. Their children noticed that her behavior began to change a few years ago and they did a psychiatric exam. She felt betrayed and, seeing her reaction, the family decided not to force her to continue any treatment for the bipolar disorder that had been diagnosed. They found out about her breast cancer very late, when they noticed a lump under her shirt.

At the hospital, the patient followed the first cycle of treatment but when she returned home she did not allow any nursing staff to enter or take any medication nor did she want to return to the hospital center. When the situation became untenable, her family admitted her to the hospital, where she accepted drugs to alleviate the pain. She died two days later.

"Any coexisting disease, physical or mental, can increase the risks of complications and makes it more difficult for the patient to complete cancer treatments," says the oncologist, impotent.

The family environment is key

The situation is very different if the patient is being treated for his mental illness. Thirty years ago, Juan - a fictitious name - was diagnosed with schizophrenia. Since then, he continues a treatment. Last year he was diagnosed with bladder cancer, of which he has been operated twice. Now he is following the chemotherapy cycles.

The family has to replace, in part, the lack of awareness that the patient may have

"I noticed when I urinated because I saw a little blood and immediately went to the family doctor; they did the tests and they diagnosed me," he told Sinc. His oncologist has explained how chemotherapy is and he is concerned about the pain, since the doctors will need to catheterize. Juan has the support of his family to deal with the disease. He is also a member of AMAFE, the Madrid Association of Friends and Family of People with Schizophrenia.

"The family has to be attentive to make up for the patient's lack of awareness of the disease," Julio Bobes, president of the Spanish Psychiatric Society and professor of psychiatry at the University of Oviedo, told Sinc.

Gaps in early detection

The life expectancy of people with a serious mental illness - such as bipolar disorder, schizophrenia or major depression - is between ten and twenty years lower than that of the rest of the population. In cancer cases, those who suffer from mental disorders are 30% more likely to die from the tumor compared to patients without these ailments. Late diagnosis decreases healing options.

"The level of self-observation typical of any person in these patients is limited and they do not realize until the mass of the tumor is very important or they are impeded for some reason, such as when swallowing or moving," describes Bobes.

In cancer patients, those suffering from mental disorders are 30% more likely to die from the tumor

Different studies have shown that the usual tests for early detection are not as effective for this group. This is the case of breast and cervical cancer. An investigation conducted in the London borough of Lambeth concluded that women with severe mental disorders were given less tests to early diagnose these two types of tumors in primary care.

Ruth Cunningham and Elizabeth Barley, coauthors of the study, attribute this imbalance to the lack of knowledge - there is a belief that screening aggravates the symptoms of mental disorder - and difficulties in managing services if people are hospitalized or unable to travel.

Other research conducted in more than 30,000 women in California (USA) with severe mental illness showed that most of them were not regularly screened for cervical cancer by the public health system. However, it is known that they have a greater risk of suffering from it, due to smoking, warns Christina Mangurian, a researcher at the University of California in San Francisco (USA) and one of the authors of the work.

Lack of coordination between oncologists and psychiatrists

In addition to early detection, the coordination between oncologist and psychiatrist is essential for a person with a mental disorder to have the same chances of surviving cancer.

"Our hospital, the Clínic de Barcelona, has a Psycho-oncology Unit led by clinical psychologists that works in coordination with oncologists, hematologists and psychiatrists to promote the comprehensive treatment of these ailments," comments Eduard Vieta, Head of Psychiatry Service and Psychology of the Hospital Clínic and scientific director of the Center for Biomedical Research in Mental Health Network (CIBERSAM).

Many oncologists are not trained to provide the care needed by people with severe mental illness

But the same does not happen in all hospital centers. Experts agree on the lack of coordination between oncologists and psychiatrists, which deteriorates the health of patients.

In several studies that analyzed the mortality of this group in the United Kingdom, scientists found that oncologists "were not really trained for the specific care needed by people with serious mental illness," says Chin-Kuo Chang, a researcher at the Institute of Psychiatry, Psychology and Neuroscience at King's College in London. According to the specialist, there are no specific clinical guidelines to help them.

His position is shared by Frank Huang-ChihChou, medical advisor at Kaohsiung Municipal Kai-Syuan Psychiatric Hospital (Taiwan). "Psychiatrists must cooperate with oncologists to improve their knowledge, which will increase the rate of treatment of patients," he says. This expert has studied how patients with schizophrenia should approach cancer, taking into account that their attitude is sometimes passive and they can have a poor lifestyle, which aggravates the disease.

When there is only the legal way

A patient with a severe mental illness may be reluctant to be treated for cancer. "If they are well with their bipolar disorder, their opinion should prevail over that of their family, as in any other," says Vieta. However, "when they are in an acute phase, we must assess each individual case and all the conditions to make the most appropriate decisions," adds the psychiatrist.

If the family fails to convince the patient to be treated, it can get a judicial incapacitation, but time plays in favor of cancer

If the family fails to convince the patient, as was the case with the U.S. woman with untreated bipolar disorder, it can take legal action to obtain a judicial incapacitation or a non-voluntary internment.

Article 200 of the Civil Code states that "persistent diseases or deficiencies of a physical or mental nature that prevent the person from governing themselves are causes of incapacitation".

"The symptomatology of the disease should impede self-government, that is, the ability of the person to make decisions about the different aspects of daily life with full and complete knowledge of its causes and consequences," explains Sergio Toro Pujol, of the law firm of Barcelona Toro Pujol, where they have treated several cases of this type, to Sinc.

It will be the relatives, the legal representative or a doctor, for therapeutic need, who can initiate these legal actions, adds the lawyer. The problem with this type of procedure, according to Bobes, is that it can take months to resolve, which makes the disease worse.

"The most usual way is to try to convince the patient, to guide him," stresses the professor of Psychiatry. "And for that the family, once again, is very important," he adds. The life of patients is at stake, because against cancer there is no time to lose.

Tele-psychiatry support

Following the publication of the article in which Jennifer Lycette denounced her patient's case, the oncologist received proposals from other doctors. "I have received some good ideas from colleagues, such as a psychiatric telemedicine service to help expand care to regions that lack mental health services," she says.

For Lycette, working in coordination with the psychiatrists of her patients has been very satisfactory, since between the two they adjusted the drugs to compensate the side effects of the oncological treatment and the patients were able to complete the whole therapy. "The doctor must pay attention to possible pharmacological interactions between cancer treatment and that of bipolar disorder," maintains the head of Psychiatry at the Clínic. Interaction may also occur with drugs prescribed for other mental illnesses.

After the removal of the reproductive organ, her oncologist at the La Fe University and Polytechnic Hospital (Valencia) informed her that the tumor was malignant and pronounced the dreaded word "cancer", the disease "from which adults die". The side effects of chemotherapy were difficult to cope with, but the prying eyes of her high classmates were even more so.

80% of children diagnosed with cancer in Spain overcome the disease, but being discharged does not mean that their health will not suffer later

This period lasted longer than expected because, four years later, she was diagnosed with a second tumor in the other ovary, which was also removed. In this case, it was benign. Now, at 25, Vanessa, who has graduated in journalism and is part of the Aspanion association, which helps families with children with cancer, only has to go to reviews with the endocrinologist. But the ghost of relapse lives with her.

Cardiovascular problems increase

Like her, 80% of children diagnosed with cancer in Spain overcome the disease. However, being discharged does not mean that their health will not suffer in the following years.

"Depending on the treatment received, survivors may be at risk for chronic diseases: endocrine, cardiac, pulmonary conditions, limitations on fertility, cognitive problems and other chronic diseases," says Lynda Varroan, pediatric oncologist at the Dana-Farber Infant Cancer Center and Blood Disorders of Boston (USA), to Sinc. "Radiation to treat cancer in childhood is associated with an increased risk of developing a new tumor in the radiated area," she adds.

A study conducted by this research center reveals that the quality of life related to the health of young people aged 18 to 29 who overcame some type of malignant childhood tumor was similar to that of adults who were twice their age, that is, between 40 and 49 years old. The dose and duration of treatment, the child's age, genetic predispositions and more or less healthy habits influence when developing future chronic diseases.

Cardiovascular diseases are the most frequent. "Survivors have a high risk of heart problems, such as heart attacks and heart failure, and stroke," says Paul Nathan, director of the Hematology and Oncology Post-Treatment Care Program at the Hospital for Sick Children (Canada).

But not all children who have overcome a cancer are equally susceptible to suffer these ailments. Those who received radiation therapy in some specific areas and those who underwent chemotherapy were treated with anthracyclines, a type of antibiotic used to treat many types of cancer, will be at greater risk.

In the chest area, "radiation can damage the heart in many ways, with damage to blood vessels, heart muscle or valves, and this can increase the risk of heart attack," Nathan says. As for radiotherapy in the head or neck, as a consequence, for example, of brain tumors, infants will be more at risk of suffering strokes in the future.

Because half of childhood cancer cases are treated with chemotherapy that includes anthracyclines, the heart muscle can be damaged and children can develop heart failure as they get older. "This last risk is small, but very high compared to that of the general population," he stresses.

According to research conducted by the oncologist, about 60% of children treated with anthracyclines will have some type of cardiac dysfunction in the future, while 10% of those treated with high doses will suffer heart failure in the 20 years following treatment.

Impact on sexual and mental health

Another side effect that Vanessa herself is suffering is fertility problems. In her case, the surgeons removed part of the ovarian cortex when they removed the second tumor so that she had the possibility of conceiving children later, as has happened with other patients. At the moment, the young woman does not know if she wants to be a mother.

Along with fertility, sexual relationships can also be affected by the cancer footprint

Along with fertility, sexual relationships can also be affected by the cancer footprint

A study in which 105 young people between 15 and 29 years old who overcame the pathology in their childhood participated showed that they had a higher prevalence of sexual or gonadal dysfunctions (in the ovaries and in the testicles).

As for brain tumors and those that need high doses of neuro-toxic treatment, they have been associated with lower rates of psychosexual development in youth and in adulthood.

In addition, specialists remind that, with physical problems, the mental can also make cause damage several years after the healing. "Many survivors believe that cancer does not have much impact on their day to day, but there are patients who will need additional psychological support," says Victoria Willard, member of the Department of Psychology at St. Jude Children's Research Hospital (USA) to Sinc.

That is one of the conclusions of a work directed by the psychologist, who has analyzed how more than 3,000 adults who overcame cancer as a child perceived the disease,” Willard emphasizes.

A girl receives treatment against cancer. / Fotolia

Emotional distress affects many of these adults, the result of the chronic disorders they experience after oncological treatment in childhood. According to research conducted in more than 5,000 cured patients, endocrine and pulmonary pathologies are associated with depression, while cardiac and pulmonary pathologies are associated with anxiety.

On the other hand, the treatment related to these ailments is related to symptoms of post-traumatic stress. In the face of psychological problems of this type, there has been an increase in the prescription of antidepressants in this segment of the population.

Monitoring after discharge

Be it physical or mental, "about 75% of childhood cancer survivors experience some late consequences and 25% of them are severe or life-threatening," warns Natalie Bradford, a researcher at the Queensland (Australia) Youth Cancer Service. After analyzing 17 studies on the effects of this disease in adulthood, Bradford is committed to a case by case evaluation.

"Long-term follow-up is needed to monitor the complications of treatment and a second cancer”, says Bradford

"Long-term follow-up is needed to monitor the complications of treatment and a second cancer. Each case requires attention and individual referral to the appropriate specialist," the researcher declares.

A request shared by patients and their associations. In Spain, pediatric oncology reference units monitor up to 10 years after the end of treatment.

"After that period, complete tests are performed and the final discharge is made. If there is a sequel as a result of cancer or the treatment received, the child or adolescent is referred to the corresponding specialist," explain sources from the Spanish Federation of Parents of Children with Cancer. "Otherwise, once the discharge is obtained, there is no long-term follow-up protocol", they complain.

Catalina Márquez, coordinator of the Pediatric Oncology Unit of the Virgen del Rocío University Hospital (Seville), recalls that there are international guidelines for long-term surveillance that are adapted and translated into Spanish. Its design depends on scientific societies.

"Work is being done to harmonize care worldwide so that all adolescents and young adults who have overcome childhood cancer have the same opportunities to access an individualized follow-up program," says the oncologist. The system will include the risk of developing long-term side effects due to illness or treatment.

A 'passport' to keep fighting

With this same philosophy, the survivor's passport was created, an electronic and paper document that is given to the patient once the medication is finished and that includes all the information related to his / her clinical history. It also describes the type of tumor, its clinical and biological characteristics, the treatment and the surgical interventions performed.

Based on these data, the passport provides guidance on possible side effects and gives recommendations. In Spain, its paper version is beginning to be extended, but the digital version is still lacking, which will be accessible from other European countries.

If the survivor has the passport, his family doctor can easily refer the patient to the appropriate specialist when necessary

"If the survivor has a passport, his family doctor can easily refer him / her to the corresponding specialist when necessary, since that document will establish personalized guidelines for long-term follow-up," they staff of the Spanish Federation of Parents of Children with Cancer points out.

In case of not having the passport, the patient should also go to the family doctor, but since the complete data of the oncological treatment do not appear, it will be more difficult to identify the side effects.

"The barriers that these doctors find are the difficult access to the clinical histories and, therefore, the scarce information about the disease and its treatments, in addition to feeling unprepared to evaluate or manage the late effects", adduces Márquez.

Vanessa, at the moment, lacks her survivor's passport. When she was discharged at the age of 21, the passport had not yet been launched. Although at the moment she does not see any symptoms in her organism, she is the first to ask for a long-term follow-up. The young woman is very aware of the effects she may have in the not so distant future.

How it affects academic and professional performance

Along with the physical and psychological sequels, childhood cancer also affects the academic performance of children. Although now the education system is better adapted to these situations, Vanessa Pérez recalls that she did not pass several subjects in her 2nd and 3rd ESO year because she could not attend the exams. In those days, in her hospital there was only one teacher, who gave her Sudoku or divisions to complete, without a syllabus. "Now they adapt it. The teachers are talked to and the exams are done at home and in the hospital. The same as they do in class," she says.

After the academic stage, the professional also suffers. A study of 1,506 Swiss adults who had overcome the disease in childhood revealed that their income was lower than that of their siblings.

"The survival of childhood cancer is associated with a considerable economic burden," says Gery Guy, an economist specializing in health at the Centers for Disease Control and Prevention (USA). After comparing data of survivors and people who had not suffered cancer, Guy and other experts concluded that the loss of annual productivity of the former is about 7,500 Euros per person per year, a figure much higher than the 2,830 Euros of annual losses who has not suffered the disease.

"People who have suffered cancer are more likely to have worse health," says Guy, which can lead certain limitations when it comes to performing a certain task or losing more days of work.

It is not an odd story. Often the diagnosis of cancer is a sort of casual encounter with something with which one has been living for who knows how long. Less common, though logical in this case, was his first reaction: “They had barely given me the news when my first impulse was already to write about it.”

And he is doing it. Mankell decided that he would periodically publish a series of articles in the Swedish newspaper Göteborgs-Posten. And he would do it “from the perspective of life, not from death”. This last quotation is taken from the first column. In the second, published in mid February, he speaks of anxiety, of hope, of the search for information. Without euphemisms.

Among other things he states, “I am a child of the 1940’s and I think that everyone of my generation automatically associates cancer with death. Even though I know, just like everyone else, that the cancer studies that have been conducted over the last 50 years have advanced unbelievably and that cancer is not synonymous with an inevitable end, the old belief no doubt remains somewhere within me.”

And he does not hold back with the metaphors. “The first waiting period is over. Now the counter-attack on my tumors will begin. In military terms, the feeling is as if the cavalry has come out of the edge of the woods and is rushing towards the enemy that has invaded my body.” Exactly the type of imagery already used by the American essayist Susan Sontag in Illness as Metaphor. Sontag suffered three different types of cancer throughout her life and passed away from leukemia at 71 years old.

Sontag and Mankell, however, are not the only ones to write about illness. And cancer is not the only illness to be written about.

Tony Judt and neurological disorders

Tony Judt, British historian and writer, was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 61. ALS is a rare but devastating disease. With the exception of but a few genetic cases, its origin is unknown and the few treatments available barely slow its progression.

As it progresses, the motor neurons, those responsible for voluntary movement including breathing, begin to deteriorate. Thought and sensitivity, however, are left intact.

Over the two years that he continued to live after the diagnosis, Judt managed to finish Thinking the Twentieth Century, a book of conversations with his colleague Timothy Snyder, Babelia’s book of the year. In 2010, he published a chilling article entitled Night in which he detailed some of the symptoms with subjective precision.

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In it, one can read: “Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers. (…) It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory..”

The combination of paralysis, along with sensitivity and thought intact, makes the solution in his case to “scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased.”

Two years after the death of Judt, his wife revealed one of the motives of the publication of that article. In addition to being a catharsis, the text was directed towards other sufferers of ALS with whom he had been maintaining correspondence. Many of them were younger than he and did not have medical insurance. It was an attempt to draw attention to the importance of applying a social policy that prioritized the human aspect over the economic one. He attempted to use his public image.

But in no way do all of the cases of writing about illness have an ending like this one.

Manuel Baixauli, a thinking stone

Along the same spectrum of neurological pathologies can be found an autoimmune syndrome – the defenses themselves attack the body– known as Guillain-Barré syndrome.

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It causes a general weakness, like ALS, and can also affect sensitivity.

Though in some cases it leaves some after effects, the majority of patients that suffer from this syndrome recover after some time.

This is what happened to the writer and painter Manuel Baixauli, who suddenly began to feel a tingling while he was at the cinema. What at first seemed like just a tickle ended up causing a paralysis that lasted for 42 days.

Though he made a full recovery, having been a “thinking stone” as he proclaimed himself to be, led him to write the novel La cinquena planta (The Fifth Storey), an allusion to the inaccessible storey of the sanatorium where he recovered. The Valencian artist in this way referred to “those things that exist, but are not seen at a simple glance.”

Lobo Antunes and Bolaño’s races against the clock

Q.— You say that when you were diagnosed with cancer, what worried you most was finishing the book...

A.— Yes, and I told the surgeon to give me a few months to finish it before dying. I was lucky and I was cured.

Antonio Lobo Antunes, a Portuguese writer (and previously doctor) is the one answering above. The book that he referring to is Archipelago of Insomnia and the cancer, one of the colon that was diagnosed in the middle of the novel’s preparatory stages. As with Mankell, his first reaction –most likely after some moments of assimilation– was to write, to keep writing. The same as Roberto Bolaño, the Chilean writer who posed a race against the clock to finish his novel 2666 while he awaited a liver transplant.

Antunes was lucky, but he did not forget, because his next novel, What Horses Are These that Make Shade on the Sea?, though he denies it is autobiographical, has a protagonist who is one Antonio Antunes, a patient in a hospital bed being treated for colon cancer. The need may be the same, but the forms differ from Mankell’s.

The Portuguese author resorts to a not-at-all condescending lyrical memory, playing with “shapes that renounce coming and going, overlapping, moving away, the word cancer and with the word cancer disjointed images, him in the dentist’s chair thinking of the sea and how the sand was shining before the gulls arrived” or, after the diagnosis:

—Do you want a week to think about it?

Think about what? How to return home inside a body which, though he knew, did not belong to him. He looked at his hands and said:

—Hands

And to what hands was he speaking? To the doctor’s? To his own?

For many writers, the need to write about their illness comes naturally. After all, it is the instrument they have closest at hand. “If I stop writing, I have nothing left,” Antunes came to say.

This is also how British writer and journalist Christopher Hitchens did it in his book Mortality, which recounts his last months of esophagus cancer. Or Anatole Broyard, literary critic with prostate cancer who did his own in Intoxicated By My Illness: and Other Writings on Life and Death, with a prologue by neurologist and writer Oliver Sacks.

The therapeutic utility of writing

Jaume Martínez, psychooncologist at the hospital Vall d’Hebron in Barcelona, states to Sinc that “these types of initiatives are fantastic. It is clear that their skills and professional experience make them inclined to seek out this form of expression and their works can serve as a model if the patient can relate to them.” However, he also points out that “others prefer to live their illness more isolated.” This begs the question of whether this same process can prove to be useful among all patients, even to those who do not write as a profession.

In a study involving 300 cancer patients, expressive writing improved their physical capacity

Writing about negative personal experiences seems to improve the physical and psychological health of those who practice it. However, this benefit has been demonstrated in healthy individuals, not so much in patients such as those with cancer. In the latter, the results are inconclusive. The bulk of the work has been conducted with breast cancer patients and, even though some attribute certain benefits to it, there is no concrete evidence that confirms its utility.

In March, however, published in the Journal of Clinical Oncology, one of the most important in the field of oncology, was the largest, most long-term study conducted to date. Researchers from the Anderson Cancer Center in Texas proved the utility of the so-called “expressive writing” in nearly 300 patients of both sexes with kidney cancer.

Half of them were asked to write about everyday happenings about the disease with no emotional charge, such as dietary or sleep concerns. The other half, with whom the expressive writing was tried, had to do it with profound thoughts: fears they had about the future, how the disease interfered with their lives, etc.

Four writing sessions of twenty minutes each were established and the results were evaluated after one and ten months. For Lorenzo Cohen, leader of the research team that conducted the study, “It is surprising that so few sessions are sufficient, but it is not clear that increasing them would mean greater benefit.”

Jaume Martínez, psychooncologist, encourages patients who feel inclined to do so to write, “but they are not the majority”

It is thought that this type of writing can be used so that patients may order their emotions, thus contributing to the decrease of the intrusive thoughts and the reduction of stress and depression –the depression associated with a lesser life expectancy in cancer patients– as well as improving the function of the immune system.

When they evaluated the results after ten months, the expressive writing had not improved the symptoms of depression or the quality of sleep, but instead had in fact reduced the symptoms related to the cancer, improved physical capacity and appeared to reduce fatigue in participants in the sessions, something that had been observed in several previous studies.

When asked about the progression of his studies, Cohen revealed to Sinc that his group is now focused on “knowing for whom this type of treatment might be more effective: either for those with symptoms of depression, with a lesser capacity for emotional expression, or for those with a higher level of education.” Additionally, they are in the process of examining data on the immune system and cortisol –a hormone related to stress.

This type of technique is not widespread in Spain. Jaume Martínez himself does not use it in clinical practice, though he encourages writing for patients who feel inclined to do so. “But they are not at all in the majority, but rather the exceptions.”

Blogs like Nacho Mirás’ for sharing experiences

Whatever the case, this protocol for writing may not strictly be the only valid one. Many patients write about their illnesses on websites. For Cohen, “this can be beneficial for several reasons; it is a way to share your thoughts and feelings and to establish a coherent history over time. And because by writing it you can receive affection and support from the people with whom you communicate.”

“If what I write can be helpful to others in similar situations, I will make some sense of all this horror,” says Mirás

After all, “We are human beings,” he reminds us. “The more connected we feel to others, the easier it is to go through difficult experiences.”

These initiatives are perhaps less widespread in Latin cultures, where according to Jaume Martínez there is a tendency towards silence and more “resistance to speaking and reading about difficulties”.

But there are notable exceptions. One is Nacho Mirás, a journalist for La Voz de Galicia who was diagnosed with a brain tumor at the end of 2013. Since then, perhaps because “who better to understand an oncology patient than another oncology patient?”, he writes occasionally in his blog, chronicling his illness.

As he himself says, “Telling about what I live and what I feel in my personal blog has been useful to me for putting my thoughts in order.”

Because “Today it’s me; tomorrow I hope it’s not you. I have stage III anaplastic astrocytoma, no laughing matter. I could die from this, but that’s not in my plans. If what I write also helps others that are in similar circumstances, then I will make sense of all this horror. It’s me who’s talking, as I live it, as I feel it.”

After several tests with inconclusive results, a biopsy determined that her symptoms had nothing to do with the accident: the girl had developed a sarcoma – a kind of aggressive tumour – and not even amputating part of her arm managed to prevent her death just months later. Obsessed with the case, Coley reviewed the medical literature looking for a more effective procedure. What he found is today considered the initial springboard for immunotherapy.

Years earlier, another sarcoma of a patient diagnosed as incurable reduced until it disappeared after being infected by a bacteria of the Streptococcus genus. Coley thought that the patient’s immune system had reacted not only against the infection, but also against the cancer, and to test it, he infected one of his own patients with the same kind of bacteria. He recovered only a few weeks later.

Spurred on by success, over the following years Coley infected several more patients, trying different combinations. Although he continued to harvest success stories, the procedure only worked on occasions and nobody knew what caused it to succeed or fail. Moreover, it was not so effective on other tumours. Radiotherapy and chemotherapy, which are much more docile and lend themselves to pre-established protocol, were championed as the cancer-fighting weapons of choice.

“Cancer immunotherapy passes the test because this year, clinical trials have cemented its potential in patients and swayed even the skeptics”, ‘Science’ affirms

But his idea was never totally abandoned. In recent decades, various methods for treating cancer via the immune system have been tested: with specific antibodies, cytokines – molecules released during the defensive reaction – and therapeutic vaccinations against the tumour. However, with the exception of certain antibodies, few significant results have been found and there is only one vaccination approved to treat prostate cancer, which has limited effectiveness.

This was the case until 2013, when the results of various clinical trials with a new type of drug put immunotherapy back in the spotlight, so much so that American journal ‘Science’ has named it breakthrough of the year.

The major scientific milestone of 2013

“Did we risk hyping an approach whose ultimate impact remains unknown? Were we irresponsible to label as a breakthrough a strategy that has touched a tiny fraction of cancer patients and helped only some of them?” These are the doubts expressed in the editorial that ‘Science’ dedicates to cancer immunotherapy. And it was presumably this question mark that prevented its competition, the British publication ‘Nature’, from including the breakthrough in its list, although it did dedicate an extensive monograph to it instead.

“Ultimately, we concluded, cancer immunotherapy passes the test,” ‘Science’ affirms. “It does so because this year, clinical trials have cemented its potential in patients and swayed even the skeptics.”

The editors of the prestigious journal are referring to trials with so-called ‘immune checkpoint inhibitors’. These drugs bring the tumour out from where it is hiding from the defence system.

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As Antoni Ribas, an oncologist at the University of California in Los Angeles, who is responsible for one of the latest studies that have put immunotherapy back on the map, explains to SINC, the role of the immune system in fighting tumours “has been a very controversial topic over the last 50 years, but it is now proven to have a role in immunosurveillance.”

Not only has it been proven to be more likely to cause cancer in immunocompromised mice; patients with chronic immunodepression, such as those undergoing treatment after an organ transplant, “have a higher incidence of cancers induced by viral infections [such as human papillomavirus for cervical cancer] and carcinogens [such as tobacco for lung cancer],” says the specialist.

These new drugs bring the tumour out from where it is hiding from the defence system

In June 2013, during the yearly meeting of the American Society of Clinical Oncology (ASCO) held in Chicago, Ribas and a colleague brought two studies to light, which were immediately published in the 'New England Journal of Medicine’, the most important journal of its kind at clinical level. Both are Phase 1 trials, small, initial studies using various doses to test the safety of a drug, not to establish their actual effectiveness. Both were performed on patients with advanced melanoma resistant to treatment with very short life expectancy.

The study led by Ribas included 135 patients who were treated with lambrolizumab, an antibody directed against PD-1. This molecule is an Achilles’ heel in the defences that protect us against cancer, T lymphocytes (or T cells), which destroy tumour cells. When the PD-1 in lymphocytes joins to its complementary PD-L1, located on the surface of the cancer cell, a cascade of reactions occurs, which finally renders the lymphocytes incapable of performing their role. The defences are left powerless against the tumour, which can thus hide away from its constant surveillance.

This is where the lambrolizumab comes into action. The antibody’s mission is to prevent this harmful union, which enables the defences to release their safety brake, recognise the tumour as foreign once more and attack it. There is a change in the paradigm: The cancer is not attacked directly; rather, the immune system’s army is released to battle with all its artillery.

Overall, 38% of patients treated this way responded significantly to the treatment, and this percentage rose for those who received the highest doses. And, although not enough time has passed yet to draw any conclusions, Ribas explains to SINC that, in light of the results, “a lasting response can be invoked in the immune system, although we would surely have to administer long-term treatment in order to achieve this.”

This lasting effect is key. Much personalised medicine is based on targeted therapies that block a particular aspect of each tumour, but in many cases the tumour reoccurs as it adapts to the treatment. In a way, this type of immunotherapy, which recruits a much more versatile army, able to recognise numerous enemies, enables cells with memory to be generated, which are retrained to attack the tumour.

The other study was led by Jedd Wolchok from the Memorial Sloan Kettering Cancer Center in New York (would you remember Coley?). In this case they treated 53 patients with two different antibodies: nivolumab, against PD-1; and ipilimumab, against CTLA-4, another molecule implicated in inhibiting the immune system, whose use for melanoma has been approved since 2011.

This type of immunotherapy, which recruits a much more versatile army, enables cells with memory to be generated, which are retrained to attack the tumour

The results were very similar to those of the previous study: 40% of patients responded to the treatment, a percentage that rose to 53% when administering the combination of doses that turned out to be the most effective. However, the side effects were notably greater as a consequence of autoimmune reactions. The immune system, now ‘freed’, attacked the patient’s own tissues.

Both of these studies are the backbones on which ‘Science’ justifies its choice. But what happened a year earlier was the real surprise. Ultimately, melanoma is a very specific kind of tumour. If this kind of immunotherapy were effective only for skin cancer, the breakthrough would be important but not revolutionary.

It transpires, however, that another two Phase 1 trials published in 2012 used antibodies against PD-1 or PD-L1 on patients with other kinds of advanced tumour. No improvements were observed in stomach or breast tumours, for example, but a small number of patients with kidney or lung cancer did respond to the therapy.

Although preliminary, these results are a real keystone and fuel the potential of these antibodies to act on a wide range of tumours.

In fact, according to Ribas, “only time will tell which tumours prove to be resistant, but we already know that in some, such as prostate or breast tumours, where there are fewer mutations than in cancers induced by carcinogens, these new drugs do not work as a single agent,” in other words alone, without being combined with other therapies. Wolchok is more ambitious in this regard, claiming that in principle, “no kind of tumour should be excluded from the offset.”

A bright but as yet uncertain future

For José Baselga, Physician-in-Chief at the Memorial Sloan Kettering Cancer Center, who did not take part directly in these studies, “this is probably the biggest breakthrough in recent years. If to this kind of treatment we add cell therapy with T lymphocytes using chimeric receptors [another type of immunotherapy still in its initial stages, but especially promising for blood tumours, such as leukaemia and lymphomas], it could change the way we treat cancer and increase the survival rate.”

For José Baselga, Physician-in-Chief at the Memorial Sloan Kettering Cancer Center,“this is probably the biggest breakthrough in recent years”

This being said, “the evidence to date is only for melanoma and for lung and kidney cancers. For other tumours, although there are studies in progress, it is still very early,” he tells SINC.

At the moment there is only one approved drug (ipilimumab) and it is only approved for melanoma. It will be some time before we know whether new treatments will be brought onto the market and for what kind of tumours. Not only this: we need to determine precisely what potential side effects there are, as well as identifying biomarkers to predict which patients will benefit and which will not.

One of these markers could be PD-L1 but, as Wolchok explains to SINC, “its expression is dynamic and can vary with time.” In fact, “no marker has yet been identified which would let us know whether a patient will benefit or not,” he adds.

Furthermore, this kind of immunotherapy could be administered in conjunction with those already existing or with others currently being studied, including chemotherapy, radiotherapy, targeted therapies or even vaccines, which would require several further studies.

Another issue will be the cost, as “they will almost certainly be expensive drugs,” Ribas muses. Although he adds that, from a broader viewpoint, “they might be cheaper in the long run, because treating metastatic cancer effectively and avoiding the greater costs that come with treating a significant portion of patients at terminal stages will save money.”

This article, like the editorial in ‘Science’, concludes: “Even in the fluid state oncology now finds itself, this much is certain: one book has closed, and a new one has opened. How it will end is anyone’s guess.”