Abstract:
This presentation focuses on ‘Big Biobanks’—that is, population-wide biobanks which are established (much like a library) as a resource to be curated for access and use by the research community. It examines three of the many governance challenges faced by the new generation of Big Biobanks. First, whether individual ‘informed consent’ can continue to function where hundreds of thousands of participants are involved and where the particular research purposes and projects to be pursued with the assistance of the biobank are not specified in advance. Secondly, whether biobanks, and researchers who have access to the resource, have any responsibility to return individual clinically significant findings to participants who, because of the longitudinal nature of such research, remain identifiable. Thirdly, how the public interest is to be understood and applied: In which circumstances will access be denied as contrary to the public interest or be granted for reasons of the public interest notwithstanding that the application is inconsistent with the consent given by participants?

Speaker(s):
Professor Roger Brownsword Professor of Law, King’s College London

Professor Roger Brownsword, who is a graduate of the London School of Economics, has been an academic lawyer for more than 40 years. Currently, he is Professor of Law at King’s College London, where he was the founding director of TELOS (a research centre that focuses on technology, ethics, law, society), an honorary professor at the University of Sheffield, and a visiting professor at Singapore Management University.

He has published more than a dozen books, including Law and the Technologies of the Twenty-First Century(co-authored with Morag Goodwin) (CUP, 2012), and has more than 200 papers in edited collections and law reviews. He has acted as a specialist adviser to the parliamentary committees of the United Kingdom dealing with stems cells and hybrid embryos. From 2004-2010, he was a member of the Nuffield Council on Bioethics; and, currently, he is Chair of the Ethics and Governance Council of UK Biobank.