New Challenges for Biobanks: Ethics, Law and Governance

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More About This Title New Challenges for Biobanks: Ethics, Law and Governance


The last few years have witnessed an important expansion in the collection and processing of human biological samples and related information data. Biobanks - huge repositories of human biological specimens - have a strategic importance for genetic research, clinical care, and future treatments. However, biobanks are facing many major ethical, legal, and governance challenges, including informed consent, privacy, ownership, commercialization, and harmonization. In addition, forensic DNA-databases raise specific issues. These databases can be an important tool for the police services in their search for the perpetrator of a crime, yet this raises ethical questions with regard to the relationship between liberty and security. This book - a publication of the European Commission funded research project GeneBanC - offers a rich source of material on the ethical, legal, and governance aspects of clinical biobanks, population biobanks, and forensic biobanks. It's research will be of interest to policy makers, academics, and legislators.


Pascal Borry is assistant professor of bioethics at the Centre for Biomedical Ethics and Law (University of Leuven, Belgium). His research is focused on fundamental and applied research in bioethics. His main research activities are concentrated on the ethical, legal and social implications of genetic and genomics. He published more than 90 publications in international peer reviewed journals. He is involved in various national and international research projects. This includes projects such as GENEBANC (Genetic bio and dataBanking: Confidentiality and protection of data. Towards a European harmonisation and policy), ENGAGE (European network of genomic and genetic epidemiology), EUROGENTEST, Public Health Genomics II, EUCellex (Cell-based regenerative medicine: new challenges for EU legislation and governance), PACITA (Parliaments and civil society in technology assessment), and the Marie Curie project Ethical, legal and Social aspects of direct-to-consumer genetic testing. For his research publications he received in 2006 the triennal prize for biomedical ethics ‘Professor Roger Borghgraef’. In 2014 he also received the Innovation Prize of the Dutch Association for Community Genetics and Public Health Genomics. He was a visiting scholar at the Case Western Reserve University, the Université de Montréal and McGill University, and the VU Medical Center Amsterdam. He is programme coordinator of the Erasmus Mundus Master of Bioethics and teaches in this programme the course Interdisciplinary Research in Bioethics. He teaches also seminars medical ethics to medical students. He is member of the Flemish Commission on neonatal screening (2012-2017), member of the Belgian Consultative Committee on Bioethics (2014-2018) and expert of the Superior Health Council (2014-2020). Within the European Society of Human Genetics he is member of the Professional and Public Policy Committee (2008-2014) and elected member of the board (2012-2017). Within the university he is member of the steering group YouReCa (Young Researchers Careers).