10.17863/CAM.48918
Milne, Richard
Morley, Katherine I
Howard, Heidi
Niemiec, Emilia
Nicol, Dianne
Critchley, Christine
Prainsack, Barbara
Vears, Danya
Smith, James
Steed, Claire
Bevan, Paul
Atutornu, Jerome
Farley, Lauren
Goodhand, Peter
Thorogood, Adrian
Kleiderman, Erika
Middleton, Anna
0000-0003-3103-8098
Participant Values Work Stream of the Global Alliance for Genomics and Health
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.
Springer Science and Business Media LLC
2019
Data sharing
Donation
Genome
Public
Survey
Trust
Adolescent
Adult
Australia
Canada
Child
Cross-Sectional Studies
Databases, Genetic
Female
Genetic Research
Genomics
Humans
Information Dissemination
Male
Middle Aged
Trust
United Kingdom
United States
Young Adult
Apollo - University of Cambridge Repository
University of Cambridge
013meh722
2020-02-08
2020-02-08
2019-12
eng
Article
https://www.repository.cam.ac.uk/handle/1810/301850
10.1007/s00439-019-02062-0
Attribution 4.0 International
open.access
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 findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.