Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.

ABSTRACT:

Background

Understanding public attitudes to genomic data sharing is widely seen as key in shaping effective governance. However, empirical research in this area often fails to capture the contextual nuances of diverse sharing practices and regulatory concerns encountered in real-world genomic data sharing. This study aimed to investigate factors affecting public attitudes to data sharing through responses to diverse genomic data sharing scenarios.

Methods

A set of seven empirically validated genomic data sharing scenarios reflecting a range of current practices in Australia was used in an open-ended survey of a diverse sample of the Australian public (n = 243). Qualitative responses were obtained for each of the scenarios. Respondents were each allocated one scenario and as

SUBMITTER: Warren V 

PROVIDER: S-EPMC10068139 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature