ILPC Evening Seminar: Benefits and Challenges of Health Data Sharing
05 Dec 2019, 17:30 to 05 Dec 2019, 19:00
Institute of Advanced Legal Studies, 17 Russell Square, London WC1B 5DR
It is a trite observation nowadays to point to the growing volume, variety, and velocity of genomic and health-related datasets being constructed around the world, as well the increasing likelihood that, at least in the research context, those datasets will be shared with third parties.
We see many examples of successful data sharing initiatives. However, despite these laudable initiatives, serious impediments to realising smooth, responsibly governed data flows across institutions, labs, clinics, and borders remain.
In his paper at this ILPC Evening Seminar, Dr Edward Dove will focus on what he views as a legal impediment in global data sharing, namely the disharmonisation of data protection laws around the globe, and connected to this, a misalignment between data protection laws and research ethics norms.
An abstract of this lecture is provided below, which will be followed by feedback and commentary from the panel.
“Although some data protection laws around the world emphasise, explicitly or implicitly, the role of ethics committees as a safeguard for protecting participants’ privacy, these entities may impose higher standards of privacy protection than data protection laws require, thereby thwarting ethical reflective equilibrium, given the considerable public and private interests that support data sharing and the already-existing safeguards of privacy that many of those laws embody.
More worryingly, the common thread of national data protection frameworks is characterised by significant gaps and marked differences of approach, impeding privacy safeguards and collaborative health research.
What I want to advocate is two-fold remedy to this bottleneck: first, a recognition of the value of ‘data stewardship’, which can be defined as the enabling of data access as a core institutional objective proportionately balanced with protecting privacy, alongside an emerging concept and value of ‘regulatory stewardship’; and second, a recognition of the value of an international data protection regulatory framework in the context of genomic and health-related data sharing.
Promisingly, several initiatives are underway in this area – here, the European Union’s General Data Protection Regulation (GDPR) has its benefits, but also several critical drawbacks. So instead, I will focus on highlighting the benefit of recent initiatives, such as the METADAC data access committee in the UK and the recently revised GA4GH Data Privacy and Security Policy, which, in my view, nudge us closer to a stewardship model for responsible data sharing that can be scaled up, and a harmonised international framework for data protection.”
Dr Edward Dove (Lecturer in Health Law and Regulation, School of Law, University of Edinburgh)
Dr Ciara Staunton (Senior Lecturer in Law, Middlesex University School of Law)
Dr Saskia Sanderson (Research Psychologist and Behavioural Scientist, University College London)
Dr Helen O’Neill (Lecturer and Molecular Geneticist, Institute of Women’s Health, University College London)
Chair: Dr Nora Ni Loideain, Director and Lecturer in Law, Information Law & Policy Centre, Institute of Advanced Legal Studies, University of London.
This event is free but advance booking is required.
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