Biobank networks, medical research and the challenge of globalisation

Dr Lisa Dive1, Dr Edwina Light1, Miriam Wiersma1, Prof Ian Kerridge1, A/Prof Wendy Lipworth1

1University Of Sydney, University Of Sydney, Australia

Biobanks are increasingly being linked together into networks in order to maximise their capacity to identify causes of and treatments for disease, and there is great optimism about the potential of biobank networks to contribute to personalised and data-driven medicine. However, there are also ethical concerns about, among other things, risks to personal privacy and exploitation of vulnerable populations. These concerns are magnified and increase in complexity as biobanks network across international borders.

This workshop will centre around an interactive exercise. Groups of workshop participants will be assigned roles such as tissue donors, biobank researchers, and ethics committee members. From these perspectives they will work through a series of scenarios involving sample and data networking and sharing, to articulate the ethical considerations raised in the context of biobank networking practices.

This interactive exercise will be complemented by presenters briefly describing elements of a current NHMRC-funded research project analysing the ethical, legal and and social issues raised by biobank networks and the challenge of globalisation. A comprehensive study of the attitudes and practices of Australian biobanks has been conducted alongside a survey of the Australian public, to assess their attitudes to tissue and data sharing. This has been complemented by conceptual analysis demonstrating how theories of globalisation can be of practical benefit in helping researchers, institutions and regulators to understand and manage the ethical issues raised by the internationalisation and commodification of tissue. An ethical framework is being developed to articulate the underlying values and ethical principles relevant to evaluating global tissue governance, informed by a panel of legal and regulatory experts.

Following the interactive exercise, preliminary findings from the current research will be presented and discussed in relation to the outcomes of the workshop.

The below table indicates the proposed structure for a workshop:

Introductory presentations:

  • Australian biobanks: empirical study of policy and practice 5 min
  • Survey of general public 5 min
  • Conceptual / theoretical analysis 5 min
  • Legal and regulatory analysis 5 min

Biographies:

Lisa Dive has a background in analytic philosophy and professional experience in health policy, and is now a postdoctoral research fellow at Sydney Health Ethics. Her research explores the challenges that emerging medical technologies – such as genomics – pose for fundamental concepts in medical ethics. She currently has a particular focus on patient autonomy, examining how it comes under pressure in information-intensive areas of medicine, and the epistemic challenges that arise with increasing complexity of medical knowledge.

Edwina Light is a postdoctoral research fellow at Sydney Health Ethics at the University of Sydney. Her doctoral work examined the use of involuntary psychiatric treatment in community settings. Her ongoing research interests are focused on the intersections between ethics, policy and law, which include an emphasis on mental health ethics, health policy, and the use of qualitative methodologies.

Miriam Wiersma is a research assistant at Sydney Health Ethics at The University of Sydney. She is currently doing a Master of Philosophy at Sydney Health Ethics with a project entitled – The allure of biomedical innovation: what are the social and psychological drivers for doctors’ use of innovative treatments? Her areas of interest include power, status and stigma processes within the medical profession, conflicts of interest in biomedical research and clinical practice, as well as clinical practice innovation.