Notes and Changes

Register here. Please note that this event will be recorded, with the exception of any live audience questions.

For a long time, data safety has been approached primarily through the frame of data protection. This dominant frame has been criticised for its focus on individual rights and interests, at the cost of collective and group interests, as well as for its neglect of larger, political questions related to the distribution of power and agency within and across populations. Can solidarity-based data governance address these problems? In my talk I will (a) provide an overview of the three main pillars of solidarity-based data governance, and (b) using empirical examples, discuss what shortcomings of the traditional focus on individual control the solidarity-based approach can successfully address, and which ones may require even more radical approaches.
 
Barbara Prainsack is a Professor at the Department of Political Science at the University of Vienna, and at the Department of Global Health & Social Medicine at King’s College London. Her work explores the social, regulatory and ethical dimensions of biomedicine and bioscience, with a focus on personalised and “precision” medicine, citizen participation, and the role of solidarity in medicine and healthcare (most recent book: Personalized Medicine: Empowered Patients in the 21st Century?, NYU Press, 2017). Barbara is a member of the Austrian National Bioethics Committee and of the European Group on Ethics in Science and New Technologies advising the European Commission.
 
Professor Martin Scheinin will be the respondent. He is a British Academy Global Professor at the Bonavero Institute of Human Rights, University of Oxford. He will arive from the European University Institute where he has been Professor of International Law and Human Rights since 2008. He is the author numerous books and articles concerning international and European human rights law, international courts and tribunals, the law of treaties, as well as comparative constitutional law. He was the leader of the EU-funded research project SURVEILLE that in 2012-2015 which developed a multidisciplinary methodology for the holistic assessment of the security benefit, cost efficiency, moral harm and human rights intrusion of a wide range of surveillance technologies, including in the context of the threat of terrorism. Besides his academic expertise, he will bring to the Bonavero Institute his long experience from the practice of human rights law, having served on the United Nations Human Rights Committee (1997-2004), as UN Special Rapporteur on human rights and counter-terrorism (2005-2011) and as member of the Scientific Committee of the EU Fundamental Rights Agency (since 2018).
 
Suggested readings:
  • McMahon, A., Buyx, A. and Prainsack, B., 2020. Big data governance needs more collective responsibility: the role of harm mitigation in the governance of data use in medicine and beyond. Medical Law Review, 28(1), pp.155-182.
  • Prainsack, B., 2019. Logged out: Ownership, exclusion and public value in the digital data and information commons. Big Data & Society, 6(1), pp.1-15.