eCite Digital Repository
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Citation
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
Abstract
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 |
Downloads: | 0 |
Repository Staff Only: item control page