The effect of context on public trust in genomic data sharing: Findings on waivers of consent and beyond.

Ms Vanessa Warren1

1University Of Tasmania, Hobart, Australia

Understanding public attitudes to genomic data sharing (GDS) is widely held to be key in shaping effective governance, yet little is known about the comparative effect of different sharing contexts. This ARC-funded study investigated 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).

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 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 presentation is one of a series exploring the qualitative insights afforded by this investigation. Here, the focus will be the key similarities and differences across the different surveyed scenarios, with a particular emphasis on the factors affecting trust in a scenario involving waived consent. Scenario-based analyses of trust in GDS are rare, and waivers of consent are particularly underexamined, though they occupy an unusual space in the ethics and regulation of research. Our findings indicate that responses to GDS are generally more diverse and distributed in a waived consent scenario, compared to other scenarios in which responses are more likely to cluster around dominant, though contextually diverse, themes.


Biography:

Vanessa is a doctoral student with the Centre for Law and Genetics at the University of Tasmania. With a background in sociology and information management, her research concerns the intersection of empirical social research in public trust and the normative regulatory environment surrounding genomic data sharing

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