What Does It Mean to Take an Ethics+ Approach to Global Biobank Governance?

Asian Bioethics Review 9 (4):285-300 (2017)
  Copy   BIBTEX

Abstract

This article re-examines and fundamentally re-assesses the symbiotic relationship between law and ethics in the governance and regulation of biobanks as a global phenomenon. Set against the two decades of experience of set-up, management and most recently granting access to biobanks to promote advances in human health, it is argued that the boundaries—and so the legitimacy—of the respective roles of ethics and law have become blurred and, potentially, blunted. The caricature of law as a tool of command and control—resulting in compliance culture—is well recognised in regulation studies, but parallels with this can now also be seen within certain ethical regimes pertaining to biobanks and human health research more generally. At the same time, the ethical content of certain legal responses to biobanks can be lacking, as some legal systems seek to regulate biobanking in inflexible and unreflective ways that potentially undermine the entire enterprise. This can result in a net failure to capture adequately particular features of biobanking that make this field so potentially rich in terms of ultimate social value and human benefit. The argument is made that the interconnected, yet distinct, nature of the contributions of law and ethics must be better understood in this setting. The central message is unapologetically sceptical about the role of law in regulating biobanking, except when we see law as process. Rather, the position is advanced that more work is required to develop governance regimes that are ‘Ethics+’ : that is, rooted in the core values and principles at stake while able to adapt and accommodate the inevitable changing landscape of biobank research and practice. While ethics are always a necessary component of a robust and defensible regimes of health research, the notion of Ethics+ directs our attention to processes in which ethical discourse and engagement can be optimised to respond to particular features of biobanks and their operation.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 91,322

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Taiwan Regulation of Biobanks.Chien-Te Fan, Tzu-Hsun Hung & Chan-Kun Yeh - 2015 - Journal of Law, Medicine and Ethics 43 (4):816-826.
Biobanking and Privacy Laws in Australia.Don Chalmers - 2015 - Journal of Law, Medicine and Ethics 43 (4):703-713.
The Biobank as an Ethical Subject.Sean Cordell - 2011 - Health Care Analysis 19 (3):282-294.
International Guidelines for Privacy in Genomic Biobanking.Adrian Thorogood & Ma'N. H. Zawati - 2015 - Journal of Law, Medicine and Ethics 43 (4):690-702.
Biobanks and human health research: Balancing progress and protections.A. Dhai, S. Mahomed & I. Sanne - 2015 - South African Journal of Bioethics and Law 8 (2):55.

Analytics

Added to PP
2018-06-30

Downloads
21 (#711,668)

6 months
3 (#1,002,198)

Historical graph of downloads
How can I increase my downloads?