International Health Data Transfer, publication

European Academy Networks Call for Urgent Solution to Health Data Transfer Barriers

Legal challenges hamper the sharing of health data with researchers outside the EU/European Economic Area (EEA), a new report by European academy networks concludes. The authors call for solutions to overcome these barriers to ensure timely and straightforward research collaboration in the public sector and thereby maximize health benefits for European citizens.

In the report “International sharing of personal health data for research” published today, the European Federation of Academies of Sciences and Humanities (ALLEA), the European Academies’ Science Advisory Council (EASAC), and the Federation of European Academies of Medicine (FEAM) call on EU policymakers and legislators for a commitment to overcome the barriers in sharing pseudonymised health data with researchers outside the EU/EEA, including the ones from the public sector, preferably under Article 46 of the General Data Protection Regulation (GDPR).

“EU/EEA citizens strongly benefit from international sharing of health data by allowing researchers to make best use of limited resources and to ensure that research conducted elsewhere is also relevant for patients in Europe. This must be encouraged and facilitated to maximise the individual and societal benefits to be obtained from the contribution of research participants”, emphasizes George Griffin, co-author of the report.

The GDPR was implemented before options for transferring data to countries outside of EU were operational. In particular, statutory conflicts between other countries’ legislation and EU fundamental rights have been a main challenge. This affects the direct transfer of public sector health data to foreign institutions and the possibility for external researchers to remotely access data at its original location.

When institutions in other countries have statutory conflicts that prevent them from signing the required contracts under the GDPR, there is currently no workable legal mechanism for sharing health data for public sector research. It has been estimated that in 2019 more than 5,000 collaborative projects were affected between EEA countries and the US National Institutes of Health alone. The authors stress that a solution is urgently needed, both for ongoing research collaborations as well as for new studies.

“Collecting and combining health data is fundamental for the advancement of medical research and improving disease diagnosis and treatment. For research to thrive, pseudonymised personal data often needs to be shared internationally between research groups in a straightforward and timely fashion, whilst securing the protection of personal data”, says Volker ter Meulen, co-author of the report.

In the joint report, the three European academy networks focus on how global sharing of health data benefits public research, describe the challenges imposed by data protection regulations, and provide possible solutions through adapting or expanding the existing legal framework.

About the report

The joint report is based on discussions between experts from across Europe that were nominated by member academies of ALLEA, EASAC, and FEAM and acted in an individual capacity, bringing together all relevant disciplines and expertise for this topic of great shared importance for all. The participants convened virtually in two working group meetings (June 2020 and September 2020) and an online cross-sectoral roundtable (October 2020). The resulting draft report was peer-reviewed by independent academy-nominated experts.

Key takeaways from the report

  • Health research is crucial for all: it benefits individual patients, population health, development of health-care systems, and social cohesion and stability.
  • Sharing pseudonymised personal health data for public sector research is essential to make effective use of limited resources.
  • Data must be shared safely and efficiently, taking account of privacy concerns: this is part of the conduct of responsible science and addressing these opportunities should be part of wider initiatives to build trust in research and researchers and to take account of patient views.
  • Legal challenges have resulted in impediments to data sharing with researchers outside the EU/EEA, affecting both the direct transfer of data to non-EU/EEA countries and remote access to data at its original location.
  • There must be increased commitment by the European Commission to urgently overcome these barriers in sharing data. Preferably, a simple and consistent operational solution would be found under Article 46 of the GDPR, whilst protecting the privacy of personal data from EU/EEA citizens.

Download the report

New Project to Explore Climate Sustainability in the Academic System

ALLEA, together with its member the German Young Academy (Die Junge Akademie), is starting a new project on the climate sustainability of science. The initiative will review the existing knowledge, experiences and data regarding how academia can support the mitigation of greenhouse gases with changes of its working modes, for instance on academic travel-culture.

The disruption of the Covid-19 pandemic has encouraged a re-thinking of working modes and practices across all sectors, including academia. This project takes this opportunity to deepen the discussion and develop a deliberated and balanced path towards a sustainable academic system.

Attending international scientific conferences and on-site international collaboration have been major drivers of research in the past decades. Now, reducing the carbon footprint through digital exchanges and finding alternatives to emission-intensive transportation could help make academia more sustainable. At the same time, a co-benefit of digital exchanges may well be an increased international participation.

The project aims at developing a proposal that supports the transformation of academia to meet the challenge of climate sustainability without compromising on excellence in research and without diminishing international exchange and collaboration in academia.

ALLEA and the Die Junge Akademie are now in the process of gathering a European group of high-level experts with a multi-disciplinary, generational, gender and geographical balance. The selection criteria seek to encompass a wide and representative set of views within the scientific community.

In the coming months, the group will review existing findings that investigate sources of emissions in academia, collect and assess best-practice examples to reduce emissions and explore potential co-benefits arising from the implementation of changes.

 

Watch Recording: Expert Workshop on Current Challenges for ILSA

Last January, the ALLEA Science Education Working Group organised an expert workshop on current challenges for international large-scale studies of achievement (ILSA). Chaired by WG member Maksym Halchenko of the National Academy of Educational Sciences of Ukraine, the meeting addressed the role of ILSAs as well as current and emerging challenges related to these studies.

A dedicated introduction to PISA (Programme for International Assessment) was presented, and participants discussed examples of assessment discrepancies when applied to heterogenous countries where school systems are very different.  This webinar was recorded and is now available to the wider public.

  • Introductory Remarks | Watch
    – Meeting chair Dr. Maksym Halchenko, National Academy of Educational Sciences of Ukraine
  • The impact of PISA on the development of educational research and evidence-based decision-making | Read abstract | Watch
    – Prof. Benő Csapó, Professor of Education, University of Szeged, Hungary
  • Circulation of a mediated artefact. Questioning the consequences of PISA for education – the example of Poland | Read abstract | Watch
    – Dr. Piotr Zamojski, Assistant Professor, University of Gdańsk, Poland
  • Use and misuse of international large-scale assessments: Why it matters to science education and policy | Read abstract | Watch
    – Dr. David Rutkowski, Associate Professor with a joint appointment in Educational Policy and Educational Inquiry, Indiana University, USA;
    – Dr. Leslie A. Rutkowski, Associate Professor of Inquiry Methodology, Counselling and Educational Psychology, Indiana University, USA, Professor of Educational Measurement, University of Oslo, Norway
  • Education as a global race – or for democracy and solidarity? The side effects of PISA testing | Read abstract| Watch
    – Prof. Svein Sjøberg, Professor Emeritus in Science Education, Oslo University, Norway
  • Plenary discussion  | Watch

The ALLEA Science Education Working Group is committed to supporting the further progression of science education throughout Europe to ensure students develop the necessary knowledge, skills and motivation to participate as active citizens and to pursue careers in science. Since June 2019, the group is chaired by Dr Cliona Murphy of the Royal Irish Academy.

PERITIA Public Lectures: [Un]Truths, Trust in an Age of Disinformation

PERITIA – Policy, Expertise and Trust – is launching a series of public lectures from 6 April to 1 June 2021. Around the topic of [Un]Truths: Trust in an Age of Disinformation’, these five meetings will explore the concept of trust and truth, both becoming contentious topics for science and democracy. Conspiracy theories disrupt political elections, disinformation campaigns target scientific consensus around climate change and vaccines, and anti-elite populism overshadows public debates. In the midst of a pandemic, citizens find themselves asking quintessential philosophical questionswhat truth is, whom we can trust, or how we should trust. 

Hosted by the UCD Centre for Ethics in Public Life and the American University of Armenia, the lectures are open to all upon registration via Zoom and moderated by science communicator Shane Bergin. The first part of this online series runs every second Tuesday, from April to June 2021. Participants are invited to join an interactive Q&A debate after each lecture. Registration is free.

  • Lecture 1: Trust in Science

    6 April 2021, 17:00 CET
    Naomi Oreskes, Harvard University

  • Lecture 2: Misunderstanding Conspiracy Theories

    20 April 2021, 17:00 CET
    Quassim Cassam, Warwick University

  • Lecture 3: The Democratic Value of Truth

    4 May 2021, 17:00 CET
    Michael Lynch, University of Connecticut

  • Lecture 4: Trustworthy Science Advice

    18 May 2021, 17:00 CET
    Heather Douglas, Michigan State University

  • Lecture 5: Trust vs. Argument

    1 June 2021, 17:00 CET
    Dan Sperber, Institut Jean Nicod

Read more and register here

PERITIA Conference ‘Trust in Expertise in a Changing Media Landscape’

The EU-funded research project PERITIA is organising the virtual scientific conference ‘Trust in Expertise in a Changing Media Landscape’, to be held on 18-19 March. The registration and programme are available on the event website

The event will bring together researchers from all over the world, discussing how best to assess, establish and maintain the credibility and trustworthiness of expertise in a rapidly changing media environment. 

Scholars will present their latest findings on distrust and disinformation, populist responses to expertise, and the role of journalism and platform algorithmic design in formations of public trust in science. 

The highlights of the multidisciplinary conference include keynotes by Onora O’Neill (University of Cambridge), Christoph Neuberger (University Free, Berlin), Natali Helberger (Amsterdam), and Michael Latzer (Zurich). 

A welcome keynote will be delivered by the organisers José van Dijck and Donya Alinejad (Utrecht University), which will be followed by two days with more than 40 speakers and a dozen of panel discussions. Among the topics covered by the programme are the pandemic, climate change, conspiracy theories, algorithms and social media platforms.

The conference will close with a roundtable discussion featuring Stefan Larsson (Lund University), Jo Pierson (Free University Brussels), Judith Simon (University of Hamburg), and José van Dijck (Moderator, University of Utrecht).

Registered participants will be invited to join the Digital Café, a networking platform run by wonder.me to informally meet participants and speakers during the coffee breaks and after the event. 

ALLEA is part of PERITIA as one of the project partners working on coordination, communications and dissemination. The research project, funded by the Horizon Europe research and innovation programme was launched as a continuation of the research work developed under ALLEA’s working group Truth, Trust and Expertise.

Horizon Europe: Three Calls for Proposals Announced

The Work Programme 2021 for the European Research Council (ERC), major actor for research grants in Europe, was presented yesterday by the European Commission. For this first work programme under Horizon Europe, three main calls for proposals for frontier research actions have been announced. The total amount of these calls is set to €1.9 billion.

The first open call announced is the European Research Council Starting Grants, aimed at supporting researchers with 2-7 years of experience since completion of PhD, to start their own research team or programme. It is accessible for any field of research conducted in a public or private research organisation. It will be launched on 25 February. More info on the Starting Grants

Later in March, Consolidator Grants will be available for researchers with 7-12 years of experience. Grants may be awarded up to €2 million for a period of 5 years. It is dedicated to researchers looking to consolidate their own research team or programme. More info on the Consolidator Grants

Finally, the Advanced Grants for leading advanced investigators will be launched in May with a budget of €626 million overall. These grants are intended for established, leading principal investigator who want long-term funding to pursue a ground-breaking, high-risk project. More info on the Advanced Grants

European Union Flag

Call for Membership – European Group on Ethics in Science and New Technologies

The European Commission has opened the public Call for Membership of the European Group on Ethics in Science and New Technologies, the independent advisory body established by the President of the Commission.  It is tasked with addressing all aspects of Commission policies and legislation where ethical, societal and fundamental rights dimensions intersect with the development of science and new technologies.

Since its inception in 1991, the EGE has provided the Commission with high quality and independent advice on manifold ethical issues. In the last three years, advice was provided on topics such as artificial intelligence (2018), the future of work (2018), COVID-19 and health crises (2020) and genome editing (forthcoming).

In addition to professional expertise, members should have a high motivation to serve the mandate of the EGE, be able and willing to provide wisdom, foresight and vision, to take the time to engage in in-depth collective ethical discussion in regular meetings in Brussels and online, to devise and draft analyses and recommendations, to build working relationships of trust and collaboration and to serve independently of other interests. They should offer a broad understanding of current and emerging ethical developments, including an understanding of the role and future of ethics in the EU context, combined with the capacity to engage with inter-, trans- and multi-disciplinary perspectives when addressing contemporary ethical dilemmas.

Interested individuals are invited to submit their application by 22 March 2021 (12:00 noon CET).

Read the full call

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.

The Science Academy’s Statement on Boğaziçi University (Turkey)

On 3 February 2021, the board of the Science Academy of Turkey (Bilim Akademisi) issued a statement about the events that followed the appointment of a new president to Boğaziçi University in Turkey. An addendum on developments at Boğaziçi University has been added on 8 February 2021.

Read the statement and addendum (PDF)