What Are the Limits of Academic Freedom? An ALLEA-SAR Conference with Ireland’s President and N. Chomsky

On 8 June, ALLEA and Scholars at Risk organised the international virtual conference ‘Academic Freedom and Intellectual Dissent’ with US linguist and political activist Noam Chomsky and the President of Ireland Michael D. Higgins as star speakers. The event focussed on the importance of intellectual dissent and academic freedom to democratic societies in a Western, particularly European, context.

The event brought together academics and politicians to discuss 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.

“When academic freedom is seriously undermined, in extremis, scholars may find themselves targeted for public vilification, job loss, imprisonment, or even death in parts of the world”, said the President of Ireland in his address.

President Higgins advocated for “the recovery of the right to pose the important questions, such as Immanuel Kant did (…): What might we know? What should we do? What may we hope?”.

ALLEA President Antonio Loprieno opened the event with a call for action to the academic community. “There needs to be a little bit of more courage on the side of academic leaders, to be proactive in defending these values”.

“One pillar of democracy”

The panel discussion, chaired by scientist Jim Al-Khalili (Royal Society), delved into the various aspects of academic freedom, from its inclusion in higher education and research policy to the role of scientists as activists.

Among the speakers was Member of the European Parliament Dr Christian Ehler who related the current threats to academic freedom in Europe to two trends: the extreme democratic tensions, particularly in democratic discourse, and the democratic decline in EU Member States.

“If academic freedom falls, one pillar of democracy falls with it”, he concluded.

Watch the recordings on ALLEA’s YouTube channel.

‘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

Registration for the Future of Science Communication Conference is open

Together with Wissenschaft im Dialog, we are happy to announce that registration for the Future of Science Communications Conference is now open! The event will take place online on 24 and 25 June 2021. Attendence is free of cost, open to all and registration will be open until 18 June, 2021.

The multidisciplinary conference will bring together outstanding researchers and practitioners, reflecting the state of the art in the field of science communication and discussing the further development of the field. Its primary goal is to provide an impetus for stronger networking and further transfer activities in science communication.

Funded by the German Ministry for Education and Research, the digital conference is free to attend and will offer interesting keynotes, panels, workshops and lightning talks featuring researchers and practitioners from various European and international institutions. The topics to be discussed include:

  • Trust in Science
  • Science and Politics
  • Science Communication in a Digital World
  • Crisis Communications
  • Target Groups of Science Communication

With the full programme now published, we are looking forward to keynotes from Mike Schäfer, Nicole Grobert and Cissi Askwall.

ALLEA is particularly excited to highlight three formats where our projects and partners are especially involved. The workshop Communicating microplastics risk: Balancing sensation and reflection is organized by colleagues at SAPEA and explores a real-life case of how SAPEA communicated the absence of evidence of risk from microplastics to human health after an evidence review report. The workshop Experiments to fight science disinformation online, lead by some of our PERITIA colleagues, will analyse the problem of scientific disinformation and look at strategies to contrast it based on evidence from experiments in social and behavioural sciences.

Lastly, Prof. Dr. Antonio Loprieno, ALLEA President, will be moderating a panel discussion on Science and Politics, featuring Prof. Dr. Janusz Bujnicki (International Institute of Molecular and Cell Biology in Warsaw), Prof. Dr. Ortwin Renn (Institute for Advanced Sustainability Studies Potsdam) and Dr. Bella Starling (Central Manchester University).

To view the entire programme with all keynotes, panels and other formats, visit the conference plattform: https://future-of-scicomm.converve.io/

About the conference

An increasing scientification of societal discourses, not only against the background of the corona pandemic, indicates that the communication of scientific knowledge will be even more important in the future. While the exchange of experience within practitioner communities is working better and better at the national and, increasingly, at the European level, the academic discipline of ‘science of science communication’ is only slowly emerging in the European research landscape. Hence, there is a lack of systematic, interdisciplinary overviews of research questions and areas. In addition, the transfer between research and practice in this field is still at a relatively low level. This lack of systematic transfer and networking leads to a lack of practical orientation in research as well as a lack of evidence orientation in the practice of science communication.

This is where the Future of Science Communication conference sets in: Its primary goal is to provide an impetus for stronger networking and further transfer activities in Science Communication. Only effective and evidence-based science communication can help to tackle the challenges in the relationship between science-public-media-politics in the coming years on the European level. We need science communication research that is well connected at the European level, systematically conducts excellent research, and promotes its transfer into practice.

Moving Research and Practice Forward

Which topics in science communication are considered to be well researched? What are the recommended courses for action in science communication practice and science policy? And how can the exchange and transfer between research and practice be better and more sustainably designed? Participants will address these overarching questions in high level panel sessions as well as in in-depth workshops, while discussing the latest findings on questions of trust in science, dealing with fake news, crisis communication, citizen science, and more. Furthermore, our speakers will use case studies on specific controversial scientific topics such as artificial intelligence, genome editing, climate change, or vaccinations to illustrate and discuss learnings from research and practice of science communication.

Over the next weeks, we will be highlighting and showcasing some of our speakers, panellists and workshops on our social media so be sure to follow us on LinkedIn and Twitter.

For a sneak peek at the programme and to register for the event, head to our website!

 

European Academies Re-Elect Antonio Loprieno as ALLEA President

ALLEA Member Academies unanimously re-elected Professor Antonio Loprieno as President for the term 2021–2023. Board Members Professor Annette Grüters-Kieslich and Professor Luke Drury were appointed as ALLEA Vice-Presidents.

The elections’ results were announced today during the annual meeting of ALLEA, the European Federation of Academies of Sciences and Humanities. As a result of the current COVID-19 pandemic, the voting took place by correspondence ahead of the virtual meeting.

“I am very grateful for the trust and support from our Member Academies. It is an honour for me to serve ALLEA during these critical times, and I am looking forward to an increasingly productive dialogue between science and society, in order to carry ALLEA’s European vision and mission across borders, disciplines and societal actors”, President Loprieno said.

As representative of the Swiss Academies of Arts and Sciences, Loprieno assumed the ALLEA Presidency in May 2018 for a first three-year term. The ALLEA President serves a maximum of two consecutive terms and chairs the ALLEA Board with responsibility for strategic priorities, the overall policy direction, budgetary issues and other governance topics of the European Academies’ federation.

Following the General Assembly, the ALLEA Board convened and appointed its members Annette Grüters-Kieslich (Leopoldina / Union of German Academies) and Luke Drury (Royal Irish Academy) as ALLEA Vice-Presidents for the President’s term 2021–2023.

ALLEA’s 2021 General Assembly also featured the virtual scientific symposium ‘Across Boundaries in Sciences’, co-organised with the Council of Finnish Academies on 5 May. The event gathered leading academics, policymakers, and civil society from over 40 countries to discuss today’s position of science in society and in relation to policy, including a particular focus on interdisciplinary research and a debate on the recently released ALLEA discussion paper ‘Fact or Fake? Tackling Science Disinformation’.

Helen Keller, Laureate of the 2021 ALLEA Madame de Staël Prize for Cultural Values

On the occasion of ALLEA’s General Assembly, law scholar Helen Keller was announced laureate of the 2021 All European Academies Madame de Staël Prize for Cultural Values. The Jury recognised Keller’s important contribution to the development and consolidation of human rights jurisprudence in Europe as well as her commitment to fundamental rights.

Helen 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 in the period of 2011-2020. In December 2020, she was appointed Judge to the Constitutional Court of Bosnia-Herzegovina.

The ALLEA Prize recognises researchers or intellectuals whose work represents a significant impact on the advancement of Europe. Professor Keller will deliver a Prize Lecture during a dedicated online event in the second half of 2021.

Scientific Symposium Discusses Collaboration ‘Across Boundaries in Sciences’

ALLEA and the Council of Finnish Academies hosted an international scientific symposium online on 5 May 2021. The event gathered leading academics, policymakers, and civil society to rethink the role of science in society in response to complex problems and urgent threats like science disinformation.

A diverse programme of keynotes, plenary discussions and breakout sessions invited the participants to explore the benefits and challenges of interdisciplinary research and the boundaries of science across regions, disciplines and generations. The conference closed with a dedicated presentation and discussion of ALLEA’s newly published report ‘Fact or Fake? Tackling Science Disinformation’.

Interdisciplinarity was the focus of the first part of the symposium which started with the keynote ‘Fostering convergence across disciplines’, by Academician of Science and Professor Riitta Hari (Aalto University).

As a physician herself working on neuroscience and arts, she reflected on her lessons learned to achieve convergence. Among her suggestions to move towards interdisciplinary, she underlined the need for deep knowledge foundations, the importance of learning how to work in a team (not in a group) and how to communicate with other disciplines.

Other speakers also recognised the great uncertainty that interdisciplinary research entails. “A discipline is like a security blanket for academics. Interdisciplinarity is inventing your own security blanket”, said Professor Joyce Tait (Co-Director at Innogen Institute, Royal Society of Edinburgh).

Moving into interdisciplinary research is not an easy choice for early-career researchers, argued Dr. Mona Mannevuo (Postdoctoral researcher, Young Academy Finland), who nevertheless encouraged her fellows to think of interdisciplinarity as a strategy: “not for instrumental purposes but for restructuring the order of knowledge.”

Science, Politics and Disinformation

In the second part, ALLEA President Antonio Loprieno shared the stage with Adrienn Király, Head of Cabinet of European Commissioner Mariya Gabriel, and Permanent Secretary Anita Lehikoinen, the Ministry of Education and Culture, Finland. He presented his view on the future of academies when rethinking the boundaries between politics and science.

According to him, in times of crisis like the ongoing pandemic, academies may prove more flexible in providing science advice thanks to their experience and know-how on increased interdisciplinary interaction and flexibility.

The symposium closed with a final panel dedicated to discuss the recently published report ‘Fact or Fake? Tackling Science Disinformation’. Its lead author, Professor Dan Larhammar (President of the Royal Swedish Academy of Sciences), provided an overview on the main findings with an optimistic message, despite the dangers of this phenomenon.

Research provides a great deal of hope to fight disinformation. There is evidence that people can be made aware of disinformation. They can be inoculated against it”, he stated after presenting examples of strategies to counter science disinformation.

The symposium was recorded and is already available to watch here.

©Krister Majander

European Coordination Needed to Fight Science Disinformation, Academies Say

In a new report, ALLEA examines the potential of technical and policy measures to tackle science disinformation and calls for improved European exchange and coordination in this field.

While disinformation strategies are intoxicating public discourses in many fields, science disinformation is particularly dangerous to democratic governance and society at large. As highlighted by the ongoing pandemic, an undermining of trust in science poses a fundamental threat to political and individual decisions based on evidence and scientific knowledge.

Over the past years, extensive research and a variety of strategies have been developed and applied to tackle science disinformation. ALLEA’s paper reviews this work, focusing on the roots and consequences of this multi-dimensional phenomenon, as well as practical solutions for policy, technology and communication.

“The science race against Covid-19 has not only been in the search for a vaccine. Another major risk has mobilised researchers: science disinformation. This report identifies key pathways to counter this ‘infodemic’ in future global crises. Seeing these problems unfolding in our societies, we need an institutionalised and coordinated strategy to galvanise researchers, communicators, and policymakers into action as early as possible”, says ALLEA President Antonio Loprieno.

The authors discuss the most prominent psychological, technical and political strategies to counter science disinformation, including inoculation, debunking, recommender systems, fact-checking, raising awareness, media literacy, as well as innovations in science communication and public engagement.

Following an analysis of the consequences of science disinformation in climate change, vaccine hesitancy and pandemics, the report concludes with a series of recommendations. The authors call for:

  • a stronger focus on communicating how science works and more dialogue in science communication practices,
  • a serious engagement with the public when exercising or communicating research,
  • valuing the virtue of intellectual humility when communicating scientific evidence,
  • the maintenance of good research practices and high ethical standards to ensure integrity and trustworthiness,
  • accountable, honest, transparent, tailored and effective science advice mechanisms.

To implement these proposals, the authors advise to establish a European Centre/Network for Science Communication and a European Code of Conduct for Science Communication.

Even though there seems to be widespread awareness of the problems and harm caused by   disinformation, there is still no coordinated European effort to respond to this with increased and better science communication. While mechanisms of science advice for policy have been introduced on different levels to bridge the gap between scientists and policymakers, no central pan-European mechanism or institution is in place to coordinate existing initiatives and develop coherent guidelines and recommendations on science communication in an inclusive manner”, the authors argue.

The discussion paper will be presented and debated at the upcoming scientific symposium ‘Across Boundaries in Sciences’, held online on 5 May, during the 2021 ALLEA General Assembly. Registration is still open at: https://alleageneralassembly.org/

Download the report here and learn more about ALLEA’s Fact or Fake Project.

 

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

Registration Open for Symposium ‘Across Boundaries in Sciences’

On the occasion of the 2021 ALLEA General Assembly, ALLEA and the Council of Finnish Academies are organising the scientific symposium ‘Across Boundaries in Sciences’ on 5 May. The online event is open to all upon registration and will consist of a full-day of thought-provoking discussions on today’s science boundaries with leading academics, policymakers, and civil society.

During the Covid-19 pandemic, the boundaries of science have been increasingly pushed and pulled. These tensions have shaken our understanding of science not only within the scientific system, but in relation to politics and society in general. In this evolving scenario, leading academics, policymakers and civil society will join to reflect upon three guiding questions:

  • How can interdisciplinary research increase the impact of science in society?
  • Are the boundaries between science and politics changing?
  • Do we need to strengthen the boundaries of science to tackle science disinformation?

The event will open with the keynote “Fostering Convergence Across Disciplines” from Prof. Riitta Hari (Aalto University). Questions regarding action-focused interdisciplinary research and the boundaries of science across regions, disciplines and generations will be discussed in the following panels, including a breakout session where participants will be able to interact within smaller groups.

In the afternoon part of the event, “Rethinking Boundaries Between Politics and Science”, participants will attend a speech by Ms Adrienn Király, Head of Cabinet of European Commissioner Mariya Gabriel, followed by the contributions of ALLEA President Antonio Loprieno and the Finnish Minister of Education and Culture Annika Saarikko.

Science Disinformation on Focus

The final panel discussion will tackle the topic of science disinformation and focus on the role of policy, science, and civil society in fighting this multidimension phenomenon in the context of the blurring boundaries of science and society.

The line of speakers will include Prof. Dan Larhammar (President of the Royal Swedish Academy of Sciences), Permanent Secretary Anita Lehikoinen (Ministry of Education and Culture of Finland), Prof. Jane Suiter (Director Institute for Future Media, Democracy and Society, Royal Irish Academy), Dr. Claire Wardle (US Director at First Draft News), and Roman Adamczyk (Research Coordinator at EU DisinfoLab).

The debate will also delve into the upcoming work of the ALLEA project Fact or Fake? Tackling Science Disinformation, which deals with the COVID-19 pandemic and the accompanying ‘infodemic’.

The symposium is free and open to all, but registration is mandatory. Learn more about the programme, concept, and speakers on our dedicated conference website, and join the discussion on social media at #ScienceXBoundaries.

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