Empowering or Exploiting Donors? Australian Stakeholders’ Perspectives on the Ethical and Regulatory Challenges Associated with Biobanking

• In Event: Constituting the Health Research Participant: Value, Assetization and Data Practices in Health Research

Abstract

Biobank networks that have the capacity to store and share biological samples and associated data offer the possibility of an enhanced understanding of the aetiology of disease, and potentially curative treatments. As biobank networks continue to expand across international borders, many ethical concerns regarding the participation of biobank donors remain unresolved – including privacy and ownership concerns, issues around informed consent, as well as the potential risk of commercial exploitation and misuse of ‘confidential’ participant data. Understanding how local biobanks are responding to these ethical challenges is important in informing future responses.

In this presentation, we offer an empirically based overview of the extent of, and ways in which Australian biobanks are contributing to, and engaging with, international biobank networks. As part of a mixed method National Health & Medical Research Council (NHMRC)-funded project entitled “Biobank Networks, Medical Research and the Challenge of Globalisation”, we surveyed Australian biobanks, and members of the Australian public. We also carried out in-depth interviews with participants from both groups.

We present participants understanding of, and attitudes towards donor participation in Australian and internationally networked biobanks, as well as their views on and responses to the associated ethical and regulatory challenges. We argue that theories of globalisation offer important insights to frame ethical responses to the challenges of potential commodification of human tissue, and benefit sharing between communities and across borders.

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Authors

• Miriam Wiersma, Sydney Health Ethics

• Ian Kerridge, Sydney Health Ethics

• Lisa Dive, Sydney Health Ethics

• Edwina Light, Sydney Health Ethics, University of Sydney

• Wendy Lipworth, Sydney Health Ethics, University of Sydney