Law, Human Rights & Climate Change: A Conversation with Helen Keller

Professor Helen Keller is a renowned lawyer, international judge, and professor of law, and she is the 2021 Madame de Staël Prize laureate. She was chosen as the 2021 laureate on account of her contribution to the development and consolidation of human rights jurisprudence in Europe as well as her commitment to fundamental rights. 

Professor Keller is Chair for Public Law, European and Public International Law at the University of Zurich. She is a former member of the UN Human Rights Committee and served as Judge at the European Court of Human Rights between 2011-2020. In December 2020, she was appointed Judge to the Constitutional Court of Bosnia-Herzegovina. We are privileged to have the opportunity to sit with Professor Keller and ask her some questions about her academic and jurist career.

 

“There are two big themes that have always interested me in my research: one is the question of how to engage the law in the protection of certain groups or interests. The second deals with the clash of different legal masses.”

 

Question: Professor Keller, what does winning the 2021 Madame de Staël Prize mean to you?

Helen Keller: I am honored and humbled, indeed. It is wonderful that my efforts in research, but also as a judge, for a strong and peaceful Europe are taken note of. This gives me strength to continue workingOf course, the prize also goes to the University of Zurich, which has always generously supported me in my involvement with the UN or the European Court of Human Rights. 

Finally, the prize comes at a special time for Swiss research in general: because the Swiss government has broken off negotiations on a framework agreement with the EU, access for Swiss researchers in Europe is restricted. So this prize comes at just the right time: It should show the academics in Switzerland that we should nevertheless continue to work on European topics and that our voice is and can be heard in Europe.

 

Q.: Your work has focused on such diverse areas of jurisprudence; you have written extensively on issues pertaining to federal as well international law, and on topics ranging from the death penalty to environmental law. What would you say are your main areas of academic interest and why?

H.K.: There are two big themes that have always interested me in my research. One is the question of how to encourage and engage the law in the protection of certain groups or interests that are a priori badly protected. This concerns the research topics that revolve around human rights and environmental protection. The second theme deals with the clash of different legal masses, be it international law on national law or soft law on hard law. I have examined how courts deal with these situations.

 

As a researcher, I always thought that the courts would write a judgment as if it were a scientific essay. But when you take part in deliberations, you see that the passing of a judgment is a process influenced by various opinions.”

 

Q.: Since the early 2000s you established yourself as a scholar of law, serving as visiting scholar at various academic institutions. Additionally, you have served as judge at the European Court of Human Rights (ECtHR) from 2011 to 2020 and you now serve as judge at the Constitutional Court of Bosnia-Herzegovina. How has this interplay between theory and practice throughout your career impacted your work and your mindset as a scholar and as a judge? 

H.K.: Once you have sat on a bench, you certainly read judgments differently. As a researcher, I always thought that the courts would write a judgment as if it were a scientific essay, that the text would be a unified whole. But when you take part in deliberations, you see that the passing of a judgment is a process influenced by various opinions. Often compromises need to be made in order to win over enough judges for the majority. Sometimes compromises are made that are not always advantageous for the coherence of the text. When I go over judgements today, I recognise these fractures and I will try to pass on this knowledge to my students.

 

Q.: What are the greatest achievements of the ECtHR that come to mind from your time as judge there? Any particular court cases that stuck with you throughout the years? 

H.K.: The Court fulfills a very important task: it repeatedly reminds the 47 states of their obligations to protect human rights and democracy. The Court has to do this in a very difficult environment, as there are many states with unstable democratic structures that regularly trample on basic human rights.  

One case that has forever tainted my memory is El-Masri v. Northern Macedonia. The complainant in this case had the misfortune of having a very similar name to a man who was directly involved in the 9/11 terrorist attacks in the United States. That is why the Macedonian security forces mistakenly arrested him at the behest of the CIA and then handed him over to the CIA. He was later forcibly transferred to Kabul, Afghanistan, where he was tortured for several months. In this judgement, the Court ruled in favour of the complainant, addressing for the first time the secret renditions and the secret prisons in Europe after 9/11. This was a taboo-breaking case, which was very important for the upholding of human rights in Europe. 

 

Intersecting Law & Climate Change

 

“Climate change is where my two research topics come together. On the one hand, there is the question of how we can better protect the environment against exploitation; on the other hand, different bodies of law collide and need to be harmonized.”

 

Q.: Climate change is a multifactorial problem that has far-reaching consequences in different aspects of human life. In a broad sense, how is the field of law and the different judicial systems in Europe being impacted by climate change?

H.K.: Climate change is where my two research topics that I mentioned earlier come together. On the one hand, there is the question of how we can better protect the environment, the ecosystem and the climate, which we have used more or less for free for so many centuries, against exploitation. On the other hand, different bodies of law collide and need to be consolidated/harmonized: international and national law, hard law and soft law (e.g. voluntary commitments by companies) and administrative law and human rights.

 

Q.: What is the link between climate change and human rights? In a recent article you say that, when dealing with cases related to climate change, courts must be careful not to behave like activists, as this could jeopardize the legitimacy and reputation of a court. Why is this?

H.K.: We face a major gap in international law to combat global warming. Although there are more or less binding requirements for states to reduce CO2 emissions, we do not have an international body that would review violations of these obligations. This is where human rights come into play. In various countries, individuals file lawsuits against states (sometimes also against large international corporations such as Shell), claiming that their human rights have been violated because the state has done too little to combat global warming. This is the link between global warming and human rights. Because the latter are secured regionally and internationally by various judicial bodies (such as the Inter-American Court of Justice, the ECtHR, the Human Rights Council etc.), these people hope to succeed in the fight against global warming.

However, courts have to be careful. If judges want to force something that society is not ready for, courts risk having their legitimacy questioned. That ultimately also means that their judgement will then not be accepted and implemented.

 

“Climate disputes exist all over the world. We often focus on North America and Europe, but a lot is happening in Asia and Africa in this area. I think we can learn from each other.”

 

Q.: The number of lawsuits linked to climate change has grown exponentially in the last years. For instance, on 29 April 2021, the German Federal Constitutional Court, following a complaint brought by young climate activists, held the 2019 German Federal Climate Change Act as partially unconstitutional. What do you think about this decision? 

H.K.: I consider the decision of the Federal Constitutional Court to be courageous and forward-looking, in the truest sense of the word. After all, the Federal Constitutional Court not only looked at the current situation for the climate and for the young applicants but said that it is important for politics to keep an eye on a period that goes beyond the current generation. Here we are facing an important problem in legal dogmatics: how do we protect the concerns and rights of future generations? The Federal Constitutional Court’s statement that politics must still enable these young complainants to have a life worth living in around 30 years’ time and beyond is an important step in the right direction. 

 

Q.: What can your research with the Climate Rights and Remedy Project at the University of Zurich tell us about such cases?

H.K.: The first phase is to show that these climate disputes exist all over the world. We often focus on North America and Europe, but a lot is happening in Asia and Africa in this area. I think we can learn from each other. 

Web portal of the Climate Rights and Remedies Project coordinated by Prof. Helen Keller at the University of Zurich

In a second phase, we will focus more on the content of the cases: How do the courts deal with questions of admissibility that arise in these climate lawsuits in a very specific and new way, e.g. who can look after the interests of future generations? How do the judges deal with the great technicality of the questions and the scientific data situation? And finally, what impact do these judgments have on improving the environmental situation in reality? 

The 2021 Madame de Staël Prize Lecture will take place on 6 November 2021 in a hybrid event during the Berlin Science Week, where Professor Keller will accept the award and deliver a lecture pertaining to her research. If you wish to attend this event please register here, and subscribe to our newsletter for future updates.

Videos and Illustrations of Science Communication Conference Available

ALLEA and the German science communication organisation Wissenschaft im Dialog organised an international conference on the Future of Science Communication last June. Videos and graphic recordings of the sessions are now available.

Funded by the German Ministry of Education and Research, the event brought together different approaches from research and practice to science communication. Experts debated the trade-offs and latest developments of this field in an age of great transformations and crises where science plays a defining role.

Climate change, the Covid-19 pandemic, disinformation, target audiences, citizen science or science advice were some of the guiding themes of two days of keynotes, debates, workshops, lighting talks, and a virtual poster exhibition. A closing panel discussion invited leading experts to provide their advice on how to shape the future of the field.

More than 1000 registered participants attended the conference and provided an impetus for stronger networking and further transfer of activities from research to practice and viceversa. Most of the sessions were recorded via Zoom and recorded graphically by illustrator Lorna Schütte.

 

Further documentation will be available in the coming months, but in the meantime you can already read a summary with some take-home messages of the conference, as well as reports on the Day 1 and Day 2 of the event published on the German science communication portal wissenschaftskommunikation.de.

Noam Chomsky on Academic Freedom and Intellectual Dissent

US linguist and political activist Noam Chomsky delivered the keynote “The University at Times of Crisis” as part of the international conference “Academic Freedom and Intellectual Dissent” co-organised by Scholars at Risk and ALLEA on 8 June. 

In his keynote, Chomsky reflected on the crisis and privatisation of universities and academic institutions. He advocated for enabling  the scientific community to make use of research funds without the intervention of politicians or donors.

He pointed out to this underlying tension within academic institutions as one of key aspects impeding the scientific community to reach an ideal of academic freedom. “Looking over the centuries, the ideal has often been uphill, but it has been a constant battle to try to sustain it in the face of external, social, economic and ideological pressures”, he argued.

He also challenged the idea of attributing the drivers of innovation and discovery in today’s societies to private businesses’ risk-taking. “This doctrine is mostly myth. Most of this work takes place in the public sector with public funding”, he stated.

An international conference on academic freedom

Chomsky’s keynote was preceded with an address by Ireland’s President Michael D. Higgins and followed by Q & A with the public moderated by Maria Baghramian (University College Dublin).

The conference focussed on the importance of intellectual dissent and academic freedom to democratic societies in a Western, particularly European, context. The speakers and the panel discussed the scope and the limits of academic freedom in the context of political populism, neoliberalism and the exigencies of the post Covid social and educational landscape.

Topics of the event included but were not limited to academic freedom in relation to other core academic values, e.g. openness, trustworthiness, research integrity, and social responsibility; the scope and limits of intellectual dissent and academic freedom; ways of strengthening academic freedom in a changing university funding landscape, the impact of social media on academic freedom and lessons from a global pandemic.

The full video of the events and the programme can be accessed on this webpage.

“When We Explain the Facts, We Should Also Explain How Misinformation Can Distort Our Facts”

 

Dr John Cook (Monash University) is an award-winning scientist and cartoonist who fights climate misinformation with humour and critical thinking. He is also the creative mind behind the Cranky Uncle, a “male, older, white, and politically conservative” caricature of those who are dismissive of climate science according to psychological research. His acclaimed book “Cranky Uncle vs. Climate Change” and game app expose misleading techniques of science denial and offer tools to build public resilience against misinformation. His work has not only been used in schools, but he has recently developed a project to counter climate disinformation with Facebook, jointly with other researchers.

He will be one of the contributors to the workshop “Using experiments to fight science disinformation online: an evidence-based guide” at the Future of Science Communication Conference organised by ALLEA and Wissenschaft im Dialog on 24-25 June. Ahead of this conference, he offers some tips and insights on how to combat misinformation in the science communication and education fields.

Question: “Cranky Uncle vs Climate Change” is the name of your book and the game you developed which brings together climate science and dealing with misinformation. Where does this name come from and what is your tip as a first step to dealing with a “cranky uncle” in our real personal lives?

John Cook: Psychological research finds that people who are dismissive of climate science are more likely to be male, older, white, and politically conservative. Cranky Uncle is the embodiment of that demographic type. And anecdotally, almost everyone has a family member, friend or colleague who captures that “cranky uncle” personality type. My first tip in dealing with your own cranky uncle is to recognise that the odds of actually changing their mind is very small, so don’t get frustrated if you don’t make much headway in your conversations. That doesn’t mean that we shouldn’t engage with them however. Often the beneficiaries of such conversations are not our cranky uncle but everyone else witnessing the exchange. That’s the purpose of the Cranky Uncle book and game – not necessarily changing our cranky uncle’s mind but inoculating everyone else against his misinformation.

“The purpose of the Cranky Uncle book and game is not necessarily changing our cranky uncle’s mind but inoculating everyone else against his misinformation”.

Q.: You wrote a paper on “which counters misinformation better: facts or logic?” concluding that logic outperformed facts in your study. How can we translate these findings for practitioners of science communication?

J.C.: The key thing that science communicators need to realise is facts are vulnerable to being cancelled out by misinformation. When people are confronted with conflicting pieces of information and they have no way of resolving the conflict, the risk is they disengage and don’t internalize our factual explanation. Our research found that if we explain the facts to people then they afterwards encounter misinformation casting doubt on the facts, the misinformation cancels out the facts. However, logic-based corrections that explain how the misinformation misleads is not vulnerable in the same way – the positive effect from logic-based corrections are not affected by misinformation. What I recommend is when we explain the facts, we also explain how misinformation can distort our facts. This is like wrapping bubble wrap around our facts to keep them safe as we send them out into a world filled with misinformation.

“If we explain the facts to people then they afterwards encounter misinformation casting doubt on the facts, the misinformation cancels out the facts.”

Q.: The Cranky Uncle game has found users all over the world, but can it be used equally effectively everywhere, or can cultural differences in communication and science communication influence how to handle misinformation?

J.C.: Currently the Cranky Uncle game is only available in English so obviously that does make it less relevant to the non-English speaking world. Even so, I was surprised to see the game being picked up in a number of European countries and hope to see that trend increase once the game is available in other languages. We are currently in the process of translating the game into German – our first test of the translation procedure. Once that process is worked out, we’ll begin translating into other languages (we’ve had volunteers approach us to translate the game into around a dozen languages and more volunteers are always welcome). There are some language difficulties in translating parts of the game from English. For example, we talk about the ambiguity fallacy, where words with double meanings can be exploited in order to mislead people. Unfortunately, words with double meanings vary across different languages so we’ve been exploring creative ways to tackle this issue. We’ve also discussed adding new cartoons for new languages. For example, a cartoon of Neal deGrasse Tyson features in the current game, as an example of a famous astrophysicist from the United States. We’re exploring incorporating the German equivalent of Neal deGrasse Tyson – an astrophysicist who is well-known in Germany.

Q.: For our Future of Science Communication Conference, we have also focused on battling science disinformation. Have you observed any trends in SciComm practice in recent years which have been particularly successful?

J.C.: The approach of using technology – particularly digital games – has exploded in recent years. Misinformation is nimble and adapts to new technologies and online platforms with disturbing rapidity. That means that science communicators need to be adaptive and innovative in our responses to misinformation. We’re dealing with a complex, ubiquitious problem which requires interdisciplinary solutions that can scale up to meet the huge challenge. Scientists need to be working with practitioners in other fields such as game and app development to develop technological solutions that can reach large proportions of the public. I am excited to see that this is already happening with a number of clever and engaging digital games springing up in response to the problem of misinformation.

“Misinformation is nimble and adapts to new technologies and online platforms with disturbing rapidity. That means that science communicators need to be adaptive and innovative in our responses to misinformation.”

Q.: You recently published a teachers’ guide for your game, and in the past you have authored textbooks for university students on climate change facts and denial. What have you learned from teachers who use your game in their classroom?

J.C.: It was enthusiasm from educators early in the game development that made me realize the classroom would likely be the venue where the game would make its biggest impact. Teachers are crying out for interactive resources that engage their students while strengthening their critical thinking skills. The other thing that struck me in my interaction with teachers has been their creativity in combining the Cranky Uncle game with classroom activities. One example is a delightful classroom assignment where students were assigned to write an email to their teacher, explaining using multiple logical fallacies why the teacher shouldn’t fail the student despite the fact that they hadn’t studied. This assignment is an elegant example of active inoculation, where students get inoculated against misleading fallacies by learning how to use the techniques of science denial. It is also an excellent opportunity for the students to practise humour and creativity, with some hilarious assignments!

“Teachers are crying out for interactive resources that engage their students while strengthening their critical thinking skills.”

Q.: Schools, universities, teachers seem to be natural partners to tackle science misinformation. In your experience, are they willing to join this “fight”? Is there enough understanding of the problem and/or resources to do this? 

J.C.: On the one hand, a number of schools and universities have eagerly embraced the opportunity to teach critical thinking and build resilience against misinformation. On the other hand, there are many more schools and teachers that are already so time-crunched, they struggle to fit extra content into their classes. It is important that more resources be developed that make it easier for teachers to incorporate these kinds of activities in their classes, while meeting their curriculum requirements. We also need to build awareness among educators of the powerful benefits of “misconception-based learning” (also known as agnotology-based learning) – teaching students by directly addressing misconceptions and misinformation. This doesn’t need to be seen as negative or combative – rather, it’s an opportunity to combine the teaching of facts with critical thinking (or from a psychological perspective, combining fact-based and logic-based communication). This type of education shows stronger learning gains which last longer than standard lessons – it’s a powerful form of education.

“We need to build awareness among educators of the powerful benefits of “misconception-based learning” (also known as agnotology-based learning) – teaching students by directly addressing misconceptions and misinformation.”

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

International Health Data Transfer, publication

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.

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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.