International Health Data Transfer, publication

Watch Recording: Webinar on “International Sharing of Personal Health Data for Research”

On 3 June, ALLEA, EASAC and FEAM co-organised an online discussion event to present the results of their first tripartite collaboration, in which they join forces to explore how barriers for sharing personal health data outside the EU/EEA for research in the public sector can be resolved. The joint report was be presented by the lead experts and then discussed with relevant stakeholders in a panel discussion. 

Event Agenda  

Introduction and presentation of academy networks 

Welcome by Professor Christina Moberg, President of EASAC 

Presentation of the project 

Chair: Professor Antonio Loprieno, President of ALLEA 

  • Why we did this project together; what is the value of international health research and what may now be lost – Rosa Castro, FEAM Policy Officer 
  • Main findings from the project – Professor Giske Ursin, Cancer Registry of Norway; and Dr Heidi Beate Bentzen, University of Oslo 

Panel discussion 

Chair: Professor George Griffin, President of FEAM and co-chair of the working group 

Short interventions followed by questions and discussion 

  • Professor Robert Eiss, US National Institutes of Health 
  • Brendan Barnes, EFPIA – European Federation of Pharmaceutical Industries and Associations 
  • Gözde Susuzlu Briggs, Data Saves Lives/European Patients’ Forum 
  • Professor Christiane Woopen, Professor of Ethics and Theory of Medicine, chair EGE 
  • Alisa Vekeman, European Commission, DG Justice 

Summary and closing remarks 

Professor Volker ter Meulen, co-chair of the working group 

‘Across Boundaries in Sciences’: Watch the Symposium’s Recordings

The boundaries of science have been increasingly pushed and pulled during the Covid-19 pandemic, shaking our understanding of science not only within the scientific system, but in relation to politics and society in general. In this evolving scenario, ALLEA and the Council of Finnish Academies hosted an international scientific symposium online on 5 May 2021.

Featuring a wide range of international perspectives from research, politics, and civil society, speakers shared and discussed their latest insights on this complex topic. The recordings are now online and available to watch (see the playlist below, or click here).

To learn more about the scientific symposium, visit www.alleageneralassembly.org.

 

©Krister Majander

Sharing Matters: Why International Data Transfer is Crucial For Health Research

Dr. Robin Fears, one of the lead authors of the ALLEA/EASAC/FEAM report “International sharing of personal health data for research”, answers questions about the importance of science advice, the key messages of the joint report, and its implications for international medical research and European citizens. He has a background in biochemistry and almost three decades of Research and Development experience in the pharmaceutical industry in the UK. He is currently the Biosciences Programme Director at EASAC.

 

Question: Thank you for joining us in this interview for ALLEA’s Digital Salon. You are currently the Biosciences Programme Director for the European Academies Science Advisory Council (EASAC). Can you explain to our readers how you became interested in science advice and what your current role entails?

Robin Fears: My interest in science advice began while I was working in pharmaceutical R&D where it was clear that success in research was dependent to a significant extent on the world outside the company. For example, there has to be a supportive public policy environment to encourage innovation and competitiveness, and engagement with research partners and other stakeholders was often essential to make the most of scientific investment and ensure its translation to novel products and services. It also became clear that various other bodies were similarly interested in the broader issues for strengthening the research enterprise and tackling societal priorities. Among the leaders in these respects, were academies of science and medicine.

On pursuing new career directions as a consultant, I found academies and their networks, with their convening powers and experience across multiple disciplines, were very receptive to initiatives to promote scientific collaboration and very committed to build the evidence base to help inform public policy, innovation and practice.

My current role for the Biosciences Programme is to provide advice and support to EASAC on a range of topics including biomedicine, food systems, biosecurity and emerging technologies, in order to tackle priorities for using the scientific evidence base to inform policy options in the EU [more details on that topic to be found here].

Q.: The Covid-19 pandemic has demonstrated the importance of international scientific collaboration, including sharing of personal health data. Why and how do good data sharing practices help scientific advancement?

R.F.: Health research produces considerable value for patients, helps to reduce health inequalities, supports development of health services and benefits society. It is often necessary to collaborate in research and to share data with other researchers in order to ensure sufficiently large sample sizes (particularly in rare diseases or subtypes of more common diseases), to identify complex pathways and improve diagnosis and treatment, thereby making the most of limited resources and of the contribution by patients and volunteers to research.

International sharing of data for research is often particularly important, for example to compare the determinants and outcomes of disease in different settings, to assess whether findings in other countries are also applicable to patients in Europe, to develop new areas of health research, such as artificial intelligence, and to capitalise on the emergence of new big data sets.

At the same time, it is essential to provide appropriate protections for personal data privacy, that is to ensure that data sharing procedures are safe and secure. The vital focus on personal data privacy is itself pivotal to supporting research because it helps to build patient trust and involvement in research.

Q.: Why is this important that ALLEA, FEAM and EASAC are working together on this topic?

R.F.: This project is the first tripartite collaboration between ALLEA, EASAC and FEAM. All three academy networks had previously worked on issues for using research data for public benefit and for protecting personal privacy. We came together in this project to facilitate the inclusion of the necessarily wide range of disciplines and experience from across medicine, ethics, health informatics and the social sciences, together with discussion with other stakeholders (including patients and health companies). Although the academy networks have collaborated previously through SAPEA (Science Advice for Policy by European Academies, part of the European Commission’s Scientific Advice Mechanism), because of the urgency to provide evidence-based advice and the important implications for many institutions and countries, ALLEA, EASAC and FEAM decided to proceed expeditiously, using their own resources to generate consensus recommendations.

Q.: The report explores how the EU’s General Data Protection Regulation (GDPR) hampers the sharing of personal health data with researchers outside the EU/EEA (European Economic Area). At first sight, this could seem like a technical problem that only affects scientists, policymakers and legislators working in this specific area. Can you explain, in simple terms, the current challenges for international medical collaborations, how this affects European citizens, and how they will benefit from the solutions proposed in the report?

R.F.: The inception of the GDPR had been welcomed by academies because of its recognition of the importance of encouraging the sharing of data for health research. However, this has not happened internationally because of disparity between EU legislation and the legislation of other countries. Unfortunately, since GDPR implementation, problems in sharing data with researchers outside the EU/EEA have increased. These problems affect both the direct transfer of data and remote access by foreign researchers to data at its original location. The impediments create major difficulties for the EU/EEA both with regard to the continuation of previous international research studies and to the initiation of new studies. For example, for just one partner, the US National Institutes of Health (NIH), it was estimated (in 2019) that more than 5,000 collaborative projects with EU/EEA countries were affected. Research sharing with major international bodies, such as WHO, is also stalled.

Currently, when other countries do not have protection procedures equivalent to the EU (adequacy) there is no workable mechanism for international sharing of health data for public sector research purposes.

While the impact of GDPR implementation on sharing personal data has been discussed in the last few years, the focus has mainly been on the problems for the private sector and the greater problems for public sector researchers have been neglected.

This affects science in Europe and worldwide. As noted in the previous answer, international sharing is crucially important to improve health and health systems and, more generally, reinforces social cohesion and stability. Science is a global endeavour. Less global sharing of data for health research is hurting everyone – patients, researchers, public health systems and society as a whole – and we risk losing the collective capacity to deliver the value of health research that has been a great European strength.

Q.: The GDPR has been implemented to protect the privacy of citizens by giving them more control over who is storing, using, and sharing their personal information. Especially in the context of health data, we are talking about extremely sensitive information. How can we ensure international medical research flourishes, while at the same time guaranteeing the privacy of the European research participants, also when their data is shared with non-EU/EEA countries?

R.F.: There are strong European protections for patients and volunteers when participating in research, for example through the statutory activities of research ethics bodies. Rapid advances in privacy-enhancing technologies will also help to provide a secure environment for data. With regard to the current impediments associated with the GDPR, the pressing need is to find a simple operational solution respectful of fundamental rights that does not conflict with other countries’ laws or with the regulations of international organisations.

Our preferred option to overcome the current barriers is to find an operational solution under Article 46 of the GDPR. Our recommendations examine how best to do this for the EU/EEA and in the broader context of the EU leading discussions worldwide to ensure privacy protection.

Our report starts with the principle that data must be shared safely and efficiently – this is part of the responsible conduct of research – and we must take account of patient views. We emphasise that strong pseudonymisation procedures (data for which identifiable information fields are replaced by codes or identifier with the key to the code kept securely and separately from the other data) are essential for sharing data. Pseudonymisation and other supplementary measures, ensure the privacy of individuals is preserved when sharing data with other researchers.

Q.: The report has been published online on 8 April on the websites of all three academy networks. What do you envision will be the next steps in resolving the aforementioned challenges in international sharing of personal health data and what will be the role of the ALLEA/FEAM/EASAC collaboration in this?

R.F.: Following publication of our report, all three networks are working to disseminate our messages at EU/EEA and national levels, to engage with policy makers, to inform the wider scientific community, and to encourage our member academies in their own countries to raise the visibility of the problems and the urgency to find a solution.

Additionally, continuing monitoring and assessment of the issues is needed, because of the fast-changing environment, technology developments, other country initiatives on data sharing, the momentum favouring open science and data, and new opportunities and needs in health care and disease prevention. We recommend development of an inter-disciplinary mechanism for the continuing monitoring of these developments, which can also serve to reinforce communication of the value and opportunities for personal data sharing for health research. Academies and their networks can have a core role in these continuing activities, for example by encouraging discussion with academic and other research institutions and research funders and with patients and other stakeholders.

We acknowledge that even when appropriate mechanisms for transferring data are established, there are other methodological and technical quality issues that need resolving to enable interoperability in the use of data. Privacy-enhancing technologies are relevant in offering potential to improve data security but their use does not circumvent the requirements of the GDPR.

The GDPR has become a privacy standard that other countries seek to follow. Therefore, the EU can take a lead role in wider, global, discussions about the value of health research, privacy rules and the free movement of data, including options for reforming regulations in other countries for reciprocity in data sharing.

As part of our dissemination and engagement efforts we are organising a public webinar to catalyse further discussion and action. The details will be announced soon.

 

Read more about international health data sharing for research here.

How to Integrate Ethics into the Design of Disruptive Technologies

Eva Buchinger – TechEthos coordinator, AIT

Bioengineering, virtual reality, autonomous systems and many other technologies enter into society and our daily lives with the potential to radically transform our work, health, environment, and even our privacy and personal interactions. To reconcile the needs of research and innovation and the concerns and aspirations of society, ethical and societal considerations should be grafted onto the thinking of research and development practices.

TechEthos is an EU-funded project that seeks to create ethics guidelines to deal with this type of new and emerging technologies with a high socio-economic impact. Eva Buchinger (Austrian Institute of Technology, AIT) is the lead coordinator of the project. In this interview, she presents the key concepts tackled by TechEthos and its expected impact. The project started in January 2021 and will run until the end of 2023. 

 

Question: What are the aims and rationale of the TechEthos project? 

Eva Buchinger: TechEthos aims to facilitate “ethics by design”, namely, to bring ethical and societal values into the design and development of new and emerging technologies from the very beginning of the process. The project will provide ethics guidelines for 3-4 selected technologiesTo reconcile the needs of research and innovation and the concerns of society, the project will explore the awareness, acceptance and aspirations of academia, industry and the general public alike.   

TechEthos aims to facilitate “ethics by design”.

Q.: What kind of technologies are you looking at and why? Can you give one example and describe why their ethics dimensions are so significant?

E. B.: We will be looking at new and emerging technologies with a high socio-economic impact and significant ethics dimensions. That is, part of our work will be identifying technologies that are socially, economically and ethically (potentially) disruptive.  

“Disruption” is thereby understood as a generic term, referring to a significant change, may it be positive or negative. We will decide which high-impact technologies we will focus on in TechEthos at the end of the project’s first phase in July 2021. This decision will be informed by a horizon scanning process consisting of a meta-analysis combined with an expertbased impact assessment. We will consider a broad set of technologies ranging from bioengineering to cognitive technologies and smart materials.  

As for now, TechEthos understands the “ethics dimension” as relating to fundamental principles such as human rights, privacy and autonomy as well as specific concerns related to health, environment and human interactions.

Q.: What kind of impact does the project expect to have for policy and the research community?

E. B.: TechEthos is explicitly designed to serve researchers from academia and industry, research ethics committees and research integrity bodies, and governance agents such as standardization bodies, regulators, and policymakers. This will be achieved by developing operational guidelines and codes and other ethical toolsengaging in the process with a wide range of ethical codes and guidelines for the target technologies that currently exist. This will serve as the basis for constructive interpretation and guide the determination of how to enhance existing frameworks or supplement existing practices with new guidelines.  

The goal is to create a set of principles that are action-oriented for the above-mentioned users. Given the wide range of possible technologies, it is impossible to fully anticipate how the various codes or guidelines will be constructed in advance. However, the methodology we are adopting is sufficiently flexible to accommodate a variety of scenarios. 

TechEthos is explicitly designed to serve researchers, ethics bodies, and policymakers.

Q.: Who is involved and why is this the best consortium to achieve the project’s aims? 

E. B.: The TechEthos consortium benefits from the diversity of its partners as well as approaches. The project consists of ten scientific partners and six science engagement organisations representing 14 countries from all over Europe. The project will additionally involve a broad range of stakeholders from academia, industry, policy, and civil society. These stakeholders will contribute through interactive formats such as interviews, surveys, workshops, scenario exercises and games, and exhibitions.

The scientific partners are universities (De Montfort UniversityTechnische Universiteit DelftUniversiteit Twente); applied research institutions (Associazione per la Ricerca Industriale, Austrian Institute of TechnologyCEA Commissariat à l’énergie atomique et aux énergies alternativesTrilateral Researchand associations specialising in research ethics (ALLEA, the European Federation of Academies of Sciences and Humanities, EUREC European Network of Research Ethics Committees Office).  

The science engagement organisations are supervised by ECSITE (Association européenne des expositions scientifiques techniques et industrielles) and located in six European countries (Science Center Network AustriaiQLANDIA Science Popularization CentreBucharest Science FestivalCentre for the Promotion of Science, Parque de las CienciasVetenskap & Allmänhet Public & ScienceAll of them have outstanding expertise in dealing with ethics of new and emerging technologies.  

The well-balanced composition of the consortium together with the project’s participative multi-stakeholder approach provides an excellant basis to achieve TechEthos’s aims.    

Q.: What have been the best and worst moments in coordinating a collaborative H2020 project so far?

E. B.: The best experience in coordinating such a diverse consortium is to know that we are working with the top specialists in the field to reach our highly ambitious goals. The greatest challenge may be the unavoidable moments of utmost tension before this wonderful diverse pool of expertise and excellence synergizes into an operational solution.

Read more

Lise Meitner: “A Physicist Who Never Lost Her Humanity”

The editorial De Gruyter has published an excerpt from the ALLEA book “Women in European Academies: From Patronae Scientiarum to Path-Breakers”. The article is part of the chapter on Lise Meitner, written by Doris A. Corradini, Katja Geiger and Brigitte Mazohl and dedicated to the scientist, the first female member of the Austrian Academy of Sciences (OEAW). The full article, including full references, can be found here. We reproduce parts of the contents, which can be read on their blog DG Conversations.

Against all odds, Austrian-born Lise Meitner devoted her life to a career in nuclear physics. On the occasion of the UN International Day of
Women and Girls in Science, we look back on the achievements of a brilliant woman who many believe was once robbed of the Nobel Prize.

“It brings me great pleasure that with the election of your person in particular, esteemed Professor, the first woman has been elected to the ranks of the Academy’s membership since its founding.” The president of the Austrian Academy of Sciences (ÖAW), Heinrich Ficker, wrote these words of congratulation in a letter dated 9 June 1948 to Lise Meitner, a physicist already famous beyond Austria’s borders, on her election to Corresponding Member Abroad for the Division of Mathematics and the Natural Sciences.

Lise Meitner was indeed the first female member of the Academy, which had been founded in 1847. As a woman and a Jew she was elected into an academy whose membership only three years prior had consisted of many members of the National Socialist party (NSDAP) (approximately 50%) and which had not significantly changed its composition since the NSDAP had been outlawed in 1945. In 1949, the same honour of being elected the first female member was conferred on her at the German Academy of Sciences in Berlin. A few years previously she had been elected to the Academies in Stockholm, Gothenburg, Copenhagen and Oslo. In 1955, she was named an External Member of the Royal Society, an honour that meant a great deal to her, and in 1960 this was followed by her election to membership of the American Academy of Arts and Sciences.

The grounds for Meitner’s election to the ÖAW were her fundamental research in the field of nuclear physics and her contribution to the study of nuclear fission. While in exile in Sweden over the New Year 1938/39, she had succeeded in explaining the physics behind the puzzling results of an experiment performed by her former Berlin colleagues Otto Hahn and Fritz Straßmann. When uranium was irradiated with neutrons, the radiochemical analysis revealed traces of the element barium. This indicated that the uranium atom had ‘split’ into lighter fragments, a result which the two chemists were unable to explain. Lise Meitner, together with her nephew Otto Robert Frisch, interpreted the reaction as nuclear fission and calculated the huge quantity of energy released in the process. Nevertheless, in 1946 Otto Hahn was the sole recipient of the 1944 Nobel Prize in Chemistry “for his discovery of the fission of heavy nuclei”.

That Lise Meitner’s involvement in this epoch-making scientific breakthrough was crucial, and yet recognition for it went instead to Hahn, can be considered a prime example of the lack of acknowledgement and visibility granted to women in science. It is particularly striking because Lise Meitner was nominated for the Nobel Prize a total of 48 times by colleagues – without success. That she went empty-handed in 1946 has been cited by the science historian Margaret W. Rossiter as paradigmatic of the unequal distribution of fame between women and their male colleagues. At one point Rossiter considered naming this phenomenon the ‘Lise Effect’, but instead decided on the ‘Matilda Effect’ – now the conventional term in the history of science – after Matilda Joslyn Gage (1826–1898), an American feminist and early sociologist of knowledge.

 

Read the full article here.

“Younger women need role models in order to develop ambition and stamina”

Today, the UN celebrates women and girls in scienceEducation, research and academia in general were traditionally male-dominated and there is still a need for change before we can describe the field as gender neutral or equal. Academia today is not only lacking in women, but diversity in general. Yet, while we look forward at how we can tackle current obstacles, it is also important to look back in history and see how the role of women in science has changed over the last centuries.  

At the end of 2020, ALLEA published the third book in its series Discourses on Intellectual Europe Women in European Academies: From Patronae Scientiarum to Path-Breakers. This volume shares the stories of thirteen women whose names have made a mark on academies in Europe. To take a closer look, we had the chance to ask historian Prof. Ute FrevertManaging Director of the Max Planck Institute for Human Development, author, and one of the editors of this book some questions. 

 

Question: In editing “Women in European Academies”, what did you learn or notice most commonly about the roles of women over the different countries and different disciplines? 

Ute Frevert: It was quite remarkable (and distressing) to see how all over Europe, the academic world in every discipline has been reluctant and adversarial to accepting female scholars and scientists. This lasted way into the 20th century, and the arguments that buttressed male monopolies were very similar. At the same time, individual women were extremely smart in moving around such obstacles, with passiontenacityand, all too rarely, with the help of progressive parents, friends, and husbands.     

Q.: Examining academia today, there are more women with on average better higher education degrees in Europe. Still, much fewer than men consider or achieve a career in academia. What changes have you been able to see in your career? 

U.T.: I have been socialized in the feminist movement of the 1970s, and since then we have definitely seen some success and progress. Yet, progress is far too slow, compared to the efforts made and the large number of qualified women who would love to pursue an academic career. Among doctoral students, the gender ratio is more or less balanced now. But we still see very few women in top positions.  

Q.: If asked why women belong in academia, why or how they can make a unique contribution, what would you say?  

U.T.: Honestly speaking, women do not have to make a unique contribution. They belong in academia as much as men do, just because they are both human beings with smart brains. So, in principle, there is no need to further justify women’s place in academia. In real life, however, women often have to be better, more innovative and original than men in order to make it.   

Q.: As an expert on emotions and history, what changes do you consider most relevant to these trends and emerging discourses on masculinity and feminism in society? 

U.T.: From a historical perspective, first- and second-wave feminism was important because they challenged and finally altered the categories applying to male versus female bodies, brains, and behaviour. They questioned the long-held notion of separate spheres, and they empowered women to move on. Becoming mentally more independent, women developed pride as well as self-confidence – which are essential prerequisites for any career.    

Q.: Looking forward, what would you like the role of women look like in academia? 

U.T.: I would like to see many more women in top positions, as full professors, research group leaders, institute directors, and presidents of academies. Younger women need role models in order to develop ambition and stamina. At the same time, being a role model does not come easy, because of complex expectations. While men just have to excel academically, women at the top are supposed to be excellent in many more matters. They have to show emotional skills like “feminine” empathy, kindness, understanding in personal relationships. They have to be accessible for all kinds of problems. Having a family proves that they lead a full life and know about motherly and wifely commitment – something that is never requested from her male colleagues. Such gendered expectations are very hard to meet and can result in mutual frustration.             

 

Prof. Ute Frevert is Director of the Max Planck Institute for Human Development, Berlin. Before joining the Institute in 2008, she taught modern history at the Universities of Berlin (FU), Konstanz, Bielefeld and Yale (USA). Her publications include: Women in German History (1989); Men of Honour: A Social and Cultural History of the Duel (1995);  A Nation in Barracks: Modern Germany, Military Conscription, and Civil Society (2004); Emotions in History – Lost and Found (2013); The Politics of Humiliation: A Modern History (2020).

Learn more about ALLEA’s book Women in European Academies: From Patronae Scientiarum to Path-Breakers and the series Discourses on Intellectual Europe.

History and Future of Knowledge – Interview With ALLEA President

How is the nature of knowledge changing? What is the impact of the digital revolution on the roles of universities, academies and science advisors? Is the democratisation of knowledge always a good thing?

Professor Antonio Loprieno, ALLEA President, discusses these questions with Toby Wardman of SAPEA. They also discuss how to digitally unwrap an Egyptian mummy, whether there is such a thing as objective truth, and how loudly Toby can scream when his audio is muted.

Listen now

“Inoculating people against being manipulated will be crucial”

What are the main approaches to win the fight against misinformation? And how do the fact-checking methods applied by social media platforms affect the actual spread of conspiracy myths? Stephan Lewandowsky, professor of cognitive science at the University of Bristol and member of the ALLEA scientific committee Fact or Fake?, gives an insight into current research on trust in science and why it is essential to foster deliberative communication formats.

Question: Mr. Lewandowsky, conspiracy myths and misinformation are not really a new thing. However, they are currently making headlines again. Are we really experiencing a rise in misinformation during the pandemic?

S. L.: I don’t know of an evidence-based answer to this question as I do not have data on the quantity of misinformation and conspiracy myths. What we do know is that people’s trust in science and research has increased in response to the corona pandemic. On that we do have data from different European countries like Germany or the U.K. as well as the US. In Germany for example the science barometer by Wissenschaft im Dialog (Science in Dialogue) showed a dramatic increase in trust to over 70 per cent in April. That has been accompanied by a vastly smaller number of people who have gone the other way and have been swept up in the toxic brew of covid denialism and anti vaccination movements. I think these are the developments we have, based on the data.

We also see that the media is paying a lot of attention to conspiracy myths and misinformation and while it is important to do so, at the same time, by talking about it a lot, you are enhancing the prevalence of misinformation as well. So that is something to watch.

“(A rise of trust in science) has been accompanied by a vastly smaller number of people who have gone the other way and have been swept up in the toxic brew of covid denialism and anti vaccination movements.”

Q.: Why are pandemics a good breeding ground for conspiracy myths?

S. L.: Pandemics are always a trigger for conspiracy myths and that has been true throughout history. People are frightened, their sense of control over their lives is disrupted and whenever that happens, people are drawn towards conspiracies. Psychologically, people seek comfort in the assumption that evil people are responsible for bad things that are happening because there is potential for the world to be better. If you have an enemy that is responsible for bad things, you can pretend that things would be better if they were not there. Accepting that a virus is responsible is something that is out of control. That is frightening and that is why these times are breeding times for conspiracy myths.

Q.: In Germany we are currently seeing protests against measures the government has taken. In how far are they due to uncertainty when introducing measures, especially with regards to the introduction of masks?

S. L.: Most Germans actually think that the government is doing a good job with the measures. So once again we should not pay too much attention to the minority of protesters. Corresponding to that we see a decline in support for the AfD because they do not offer any solutions for the problems at hand. I think we have to be careful not to exaggerate the uncertainties that existed. Social distancing for example was never doubted as an effective measure against the pandemic and even though there was uncertainty about masks, a lot of scientific advice was actually quite consistent. Of course it would have been nice, if the science on masks had been available more quickly but I do not think uncertainty was a trigger for conspiracy myths in this case.

Q.: If trust is rising, why should we still care about fighting conspiracy myths? 

S. L.: The mere exposure to conspiracy myths can potentially reduce people’s trust in official institutions and is inducing people to become disengaged with politics. So the mere exposure has adverse consequences and that’s not talking about the people who believe in them. Secondly, we have data showing that the people who believe in conspiracy myths are less likely to comply with social distancing measures. So there is an association between not doing what you are supposed to do and believing in conspiracy myths. We do not know if there is a causal relationship but we know there is an association. The final thing is that ultimately conspiracy theorists are more prone to violence than others and are more likely to endorse violence as a means to resolve conflicts. So there are a number of reasons why we should be concerned about them and why we need to tackle the problem at hand.

“We do know that it is better to inoculate people before they are exposed to conspiracy myths than to fight them after they are spread.” 

Q.: What are the main approaches to win the fight against misinformation?

S. L.: First of all we do know that it is better to inoculate people before they are exposed to conspiracy myths than to fight them after they are spread. Ideally what could have been done right in the beginning of the pandemic would have been to communicate up front not only what we know about the virus but also what might happen during the pandemic with regards to conspiracy myths developing. There is evidence that shows that telling people how they will be misled is actually beneficial to building up resistance. On a societal level the moment to do so has passed, but we can still do it with new disinformation that may come along.

The second thing is, that you can correct things and you can get through to people who are spreading conspiracal narratives and it has been shown that not all people are completely resistant to correction. Sometimes the narratives are just used as a rhetorical device and for that group of people corrections can work and are a good device. For hard core conspiracy theorists where the myths have become part of their identity, that is not the case and talking them out of them is very difficult.

If (scientists) communicate well and explain things online and offline, they can be an asset in the fight against misinformation. The same is true for physicians who are very influential and can play a large role. I think by now most scientists – especially younger ones – are very capable of communicating well and know how to use social media well.”  

Q.: What can scientists themselves do to combat fake news?

S. L.: A lot. Scientists are among the most trusted people in most societies including Germany. If they communicate well and explain things online and offline, they can be an asset in the fight against misinformation. The same is true for physicians who are very influential and can play a large role. I think by now most scientists – especially younger ones – are very capable of communicating well and know how to use social media well.

“Algorithms should not draw attention to outrage and myths and that is something we have to tackle and deal with.” 

Q.: Some of the social media platforms like Facebook or Twitter have started introducing fact checking. What is your opinion on those?

S. L.: I do not think there is a single magical silver bullet to the problem. We instead need to add up different measures and put them together to solve the issue. Labeling – if done correctly – can be very effective. What Twitter is doing is OKish but not good enough. What Facebook has done with Covid misinformation has been much better because they put an opaque banner on them that hid the headline so that you could not see it at first glance. That is much more effective than the little button twitter put underneath the information. To be effective you have to introduce friction that prevents access to the information that is critical. Not totally of course because that is censorship, but sufficiently so that it causes friction. The Facebook manipulation cut sharing of misinformation by 95 per cent which is very good and that shows that labeling can work, if it is done right.

But even before you get there what really needs to be done and needs to be discussed are the algorithms of the platform. Nothing you see on Facebook or Twitter is there accidentally but is put there by the algorithms. Those algorithms are often guiding users to extremist content and even though the platforms knew that they did not do anything against it because they were afraid that it would cut into their revenue. We therefore have to take a close look at the information diet that is created to us and we have to make them accountable for their activities. This is not about censorship but about mandating information and about holding platforms accountable. Algorithms should not draw attention to outrage and myths and that is something we have to tackle and deal with.

Q.: How likely do you think it is that this will happen sooner than later?

S. L.: In the United States we are probably not going to get there any time soon. In Europe chances are much higher. The European Union will be taking action and I have written an in depth report for them and hopefully they will use some of those ideas when it comes to introducing regulations.

“Dialogue can be successful and positive in formats that focus on deliberation, on sharing data and on moderated debates in which people can participate.”

Q.: What would a good online discourse look like?

S. L.:  Dialogue can be successful and positive in formats that focus on deliberation, on sharing data and on moderated debates in which people can participate. That is something we are not finding online at the moment but we know it works from deliberative assemblies like those in Ireland which debated topics like abortion and gay marriage. Topics with the potential to tear a country apart but that did not happen because they were led successfully. There is evidence that this can work online as well if you design spaces in which this can work. The moment you create those spaces and make them work you move away from the terribly polluted spaces that we are currently having.

Q.: One topic people are currently worried about is vaccinations and trust in vaccines. Are you worried that this will be a huge breeding ground for conspiracy myths?

S. L.: It depends on the country you are talking about. I am worried about the situation in the U.K. because the government has not exactly a good track record in managing the pandemic and thus it is very likely to be problematic. In Germany I think it is much more likely to work well. Countries like Germany, New Zealand or Australia with well-functioning governments acting in the interest of the people will be able to deal with the situation well. What is crucial is to make the vaccine easily available and to make uptake easy. I don’t think we will be facing insurmountable problems especially if you make it mandatory to be vaccinated to be able to take part in certain activities we will be fine. Once again, inoculating people against being manipulated will be crucial and we should be planning those campaigns right about now.

 

Stephan Lewandowsky is professor of Cognitive Science at the University of Bristol. His research examines people’s memory, decision making, and knowledge structures, with a particular emphasis on how people update their memories if information they believe turn out to be false. This has led him to examine the persistence of misinformation and spread of “fake news” in society, including conspiracy theories.

He will speak at the session “Disinformation, Narratives and the Manipulation of Reality“ organized by ALLEA at the International Forum on Digital and Democracy on the 10th and the 11th of December. The session will present some of the findings of the JRC Report on Technology and Democracy: Understanding the influence of online technologies on political behaviour and decision-making by Stephan Lewandowsky and Laura Smillie.

This interview was conducted by Rebecca Winkels and was first published on the Wissenschaftskommunikation’s website. Credit picture: Stephan Lewandowsky. 

Climate Change Education Webinar

On 24 November, ALLEA and the Royal Irish Academy, held a webinar entitled “Can Climate Change Education save the planet? European perspectives” to address the role and importance of climate change education within both the European and the Irish context.

If you missed it, now you have an opportunity to watch the recording on YouTube:

Key speakers at the webinar included:

  • Dr Cliona Murphy, Dublin City University and ALLEA Science Education Working Group Chair
  • Professor Paweł Rowiński, Vice-President of the Polish Academy of Sciences and ALLEA Board Member
  • Dr Philippe Tulkens, acting Head of the Climate and Planetary Boundaries Unit in Directorate “Healthy Planet” of the European Commission
  • Professor Pierre Léna, Emeritus Professor at the Université Paris-Diderot
  • Dr Agata Gozdzik, Head of the Science Communication and Education Unit, Polish Academy of Sciences
  • Dr Michael John O’Mahony, Director of Environmental Education Unit, An Taisce – The National Trust for Ireland

Science Does Not Have a Passport

A commentary by the ALLEA President

It has now been more than 4 years since the decision by the people of the United Kingdom to depart from the European Union. The European research community was united in shock upon receiving the results of the plebiscite and has since, with many voices and on many occasions, raised concerns that scientific collaboration should be looked at as a global concern rather than a political negotiation piece. Scientists are by nature revelling in discourse and disagreement, yet for once we all shared the same sentiment: we are better off together.

In fact, not only are we better off together, after more than 60 years of growing ever closer, of researchers moving about freely across the continent, of multinational research consortia spearheading most innovative scientific breakthroughs, it is inconceivable to disentangle the many co-operations that exist on so many levels across European academia. And even if we were able to do so, the price to pay would be diminished quality of research, something that we can all agree on would be a step in the wrong direction.

It now seems that at long last, the negotiations on the UK departure from the EU are coming to a close. What started as uncertainty on the conditions of future research association of the UK to the EU is now turning into tense anxiety as firm commitments still go amiss and researchers on both sides of the English Channel fear their tried and trusted collaborations with their partners may soon come to a premature end.

Throughout the process ALLEA has continuously reminded decision-makers on both sides of the table that scientific research must not be used as a pawn in political tit-for-tat. In doing so we did not tire to remind them that partnerships are difficult to build, but easy to destroy. At the moment, we are running the danger of doing the latter without any regard on how to rebuild them after.

As if we needed any more reminders of the vital necessity of international research collaboration, this year’s COVID-19 pandemic has made this point ever more pressing. By giving up on long-established and well-functioning research collaboration mechanisms we risk being worse prepared than better prepared for the global challenges to come, COVID-19 was certainly not the last of them.

ALLEA therefore can only reaffirm its call, which we share with our UK Member Academies, to ensure the highest degree of participation of UK research institutions in EU research framework programmes. As a Swiss myself, I know all too well what it feels like to be in a limbo when it comes to the relationship with the EU. But precisely for this reason I do know that Switzerland benefits from being part of the European scientific area much more than any perceived or real loss of sovereignty could take away from.

The scientific endeavour inherently does not have a passport, it is a truly global citizen and it would be a shame to restrict its abilities for the purposes of political negotiations. It is therefore my urgent call to everyone involved to let common sense prevail, to show reciprocal trust and to ensure that we can wake up in 2021 knowing that our colleagues and partners from yesterday will still be our colleagues and partners tomorrow.

Antonio Loprieno

ALLEA President