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

Milne, R, Morley, KI, Howard, H, Niemiec, E, Nicol, D ORCID: 0000-0002-6553-2839, Critchley, C, Prainsack, B, Vears, D, Smith, J, Steed, C, Bevan, P, Atutornu, J, Farley, L, Goodhand, P, Thorogood, A and Kleiderman, E 2019 , 'Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia' , Human Genetics, vol. 138, no. 11-12 , 1237–1246 , doi: 10.1007/s00439-019-02062-0.

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Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big datainitiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collectedresponses from representative publics in the USA, Canada, UK and Australia (n=8967). Participants were most likely totrust 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 morelikely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from theUSA. 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 intrust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These fndingshave relevance for eforts to expand genomic medicine and data sharing beyond those with personal experience of geneticsor research participants.

Item Type: Article
Authors/Creators: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
Keywords: data sharing, public, trust, genome, donation, survey
Journal or Publication Title: Human Genetics
Publisher: Springer
ISSN: 1432-1203
DOI / ID Number: 10.1007/s00439-019-02062-0
Copyright Information:

© The Author(s) 2019

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