The importance of benefit sharing for public trust in genomic data sharing

Professor Dianne Nicol1, Dr Rebekah McWhirter, Ms  Vanessa Warren, Mr Jarrod Walshe, Professor Christine Critchley

1University Of Tasmania, Hobart, Australia

Understanding public attitudes to genomic data sharing (GDS) is widely held to be key in shaping effective governance. This ARC-funded study is investigating a range of factors affecting trust in GDS using an empirically validated set of scenarios reflecting current GDS practices in Australia (McWhirter et al, (2020) 15 JERHRE 355).

We undertook an open-ended survey of a representative sample of the Australian public (n=243) to obtain qualitative responses to each scenario. Respondents were each allocated one scenario and asked five questions capturing views on: whether they would share data; what sharing would depend on; benefits and risks of sharing; risks they were willing to accept; and what could increase their comfort with sharing. A thematic analysis was used to examine responses, coded and validated by two blinded coders.

This dataset provides a rich resource for examining the factors that influence trust in GDS across scenarios. This presentation is one of a series examining a range of specific factors identified as having greatest influence on trust. The particular focus here is on conceptions of benefit sharing, which  our previous research has shown to be multifaceted in the context of biobanking (Nicol and Critchley, (2012) 21 PUS 534). The research presented here shows that, although benefit sharing is consistently seen as important across scenarios, the layers of complexity increase as we move between different scenarios. This qualitative analysis provides deeper insight than standard population wide surveys, facilitating broader examination of popular assumptions regarding conceptions of benefit and trust in GDS.


Biography:

Dianne Nicol is a distinguished professor of law at the University of Tasmania in Australia. Her research interests focus on the interface between law, ethics and biomedicine. Among her other roles, she is chair of the National Health and Medical Research Council Embryo Research Licensing Committee and a member of the Australian Genomics Health Futures Mission Expert Advisory Committee. She is a fellow of the Australian Academy of Law and the Australian Academy of Health and Medical Sciences. Dianne is Director of the Centre for Law and Genetics (CLG) at the University of Tasmania. Dianne’s current research focuses primarily on the regulation and governance of personalized medicine, genomic data sharing, biobanking, genome editing and other emerging technologies, together with commercialisation of biotechnology and patenting of biotechnological inventions.

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