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Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia


Milne, R and Morley, KI and Howard, H and Niemiec, E and Nicol, D and Critchley, C and Prainsack, B and Vears, D and Smith, J and Steed, C and Bevan, P and Atutornu, J and Farley, L and Goodhand, P and Thorogood, A and Kleiderman, E, Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia, Human Genetics, 138, (11-12) pp. 1237-1246. ISSN 1432-1203 (2019) [Refereed Article]

Copyright Statement

The Author(s) 2019

DOI: doi:10.1007/s00439-019-02062-0


Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n=8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These fndings have relevance for eforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.

Item Details

Item Type:Refereed Article
Keywords:data sharing, public, trust, genome, donation, survey
Research Division:Human Society
Research Group:Sociology
Research Field:Sociology of health
Objective Division:Expanding Knowledge
Objective Group:Expanding knowledge
Objective Field:Expanding knowledge in human society
UTAS Author:Nicol, D (Professor Dianne Nicol)
UTAS Author:Critchley, C (Associate Professor Christine Critchley)
ID Code:136361
Year Published:2019
Web of Science® Times Cited:41
Deposited By:Law
Deposited On:2019-12-16
Last Modified:2020-05-05

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