When biobanks go global: ethical challenges and governance responses

• In Event: How Do Governance Mechanisms for Science and Technology Travel Across Borders? 2

Abstract

Biobanks are increasingly linking together in order to maximise their capacity to identify causes of and treatments for disease, and there is great optimism about the potential of these 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. Accordingly, there is a growing recognition of the need for biobanks to adopt governance mechanisms that are cognisant of the challenges of globalisation.
In this presentation, we will present findings from our National Health & Medical Research Council (NHMRC)-funded project "Biobank Networks, Medical Research and the Challenge of Globalisation". This is a multidisciplinary and mixed methods project that aims to inform the development of ethically rigorous and culturally informed approaches to the challenges that arise when biobanks form global networks. We will focus in this presentation on Australian biobankers' views about the governance challenges of networking across international borders, and how Australian biobanks respond and adapt governance mechanisms in order to participate in global biobanking networks. We will also consider how theories of globalisation can help researchers, institutions and regulators to conceptualise the governance of biobanks across international borders.

Authors

• Lisa Dive, Sydney Health Ethics

• Edwina Light, Sydney Health Ethics, University of Sydney

• Miriam Wiersma, Sydney Health Ethics

• Ian Kerridge, Sydney Health Ethics

• Wendy Lipworth, Sydney Health Ethics, University of Sydney