Disruption, Diversity, and Global Biobanking

Abstract

Beskow and Weinfurt’s analysis of biobank consent comprehension draws attention to important epistemic and axiological questions, not the least of which concern how we can know what are the right or wrong ways to conduct contemporary biobank research. Their empirical work highlights uncertainty and dissonance among stakeholders about what immutable values should underpin biobank consent practices, as well as the differences between what experts can expect to occur and what will happen when consent and other agreed processes are put into action. These questions become potentially more complex as biobanks continue to network globally, and the moral, social, legal and political connections among and between prospective participants, researchers and regulators are disrupted. The initial findings of our Australian research of the global networking of biobanks (in progress) suggest that factors other than models of consent can be as, or more, important to people’s trust and engagement with global biobanking. Similar to Beskow and Weinfurt’s study, these perspectives exhort us to ensure that current efforts toward global harmonization of biobanking regulatory frameworks are informed by diverse perspectives garnered from both theoretical and empirical methods.