The multifaceted role of privacy for public trust in genomic data sharing

Professor Margaret Otlowski1

1University Of Tasmania, Hobart, Australia

Public trust is widely recognised as a key consideration in shaping public attitudes to genomic data sharing (GDS). This ARC-funded study investigates 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).

An open-ended survey of a representative sample of the Australian public (n=243) was undertaken to obtain qualitative responses to each scenario. Respondents were each allocated one scenario and asked five questions capturing views on: whether they would share their genomic 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 offers valuable insight into the factors that influence trust in GDS, and their interaction, across scenarios highlighting the importance of context. 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 the role privacy plays in positively influencing participants willingness to share and/or as a perceived risk and reason not to share. The research presented here shows that notwithstanding variations across the scenarios, bringing diverse factors into play, privacy was a consistent consideration, reinforcing the pivotal role it plays in effective GDS practice and governance. Participant responses also shed light on varying perspectives on the nature of genomic information and whether it is identifying information.


Margaret Otlowski is Professor of Law at the University of Tasmania.  Her research expertise is in health law with a particular focus on law and genetics and issues of regulation, privacy, consent, discrimination and data sharing. Margaret has  served as member of the NHMRC’s Human Genetics Advisory Committee and AHEC.

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