TY - JOUR

T1 - Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

AU - Milne, Richard

AU - Morley, Katherine I.

AU - Howard, Heidi

AU - Niemiec, Emilia

AU - Nicol, Dianne

AU - Critchley, Christine

AU - Prainsack, Barbara

AU - Vears, Danya

AU - Smith, James

AU - Steed, Claire

AU - Bevan, Paul

AU - Atutornu, Jerome

AU - Farley, Lauren

AU - Goodhand, Peter

AU - Thorogood, Adrian

AU - Kleiderman, Erika

AU - Middleton, Anna

AU - on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health

N1 - Funding Information: This work was supported by Wellcome grant [206194] paid to AM, RM and LF via Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus. We would like to thank the following people from GA4GH for their encouragement and infrastructure support: Peter Goodhand, Julia Wilson, Bartha Knoppers. This work was also supported by Global Alliance for Genomics and Health, with their funding delivered via Wellcome (GA4GH grant, with thanks to Audrey Duncansen). Danya Vears acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. Danya Vears is a postdoctoral research fellow of the Research Foundation—Flanders (FWO-Vlaanderen). Funding Information: This work was supported by Wellcome grant [206194] paid to AM, RM and LF via Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus. We would like to thank the following people from GA4GH for their encouragement and infrastructure support: Peter Goodhand, Julia Wilson, Bartha Knoppers. This work was also supported by Global Alliance for Genomics and Health, with their funding delivered via Wellcome (GA4GH grant, with thanks to Audrey Duncansen). Danya Vears acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. Danya Vears is a postdoctoral research fellow of the Research Foundation?Flanders (FWO-Vlaanderen). Publisher Copyright: © 2019, The Author(s).

PY - 2019/12/1

Y1 - 2019/12/1

N2 - 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.

AB - 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.

KW - Data sharing

KW - Donation

KW - Genome

KW - Public

KW - Survey

KW - Trust

UR - http://www.scopus.com/inward/record.url?scp=85073812224&partnerID=8YFLogxK

U2 - 10.1007/s00439-019-02062-0

DO - 10.1007/s00439-019-02062-0

M3 - Journal article

C2 - 31531740

AN - SCOPUS:85073812224

VL - 138

SP - 1237

EP - 1246

JO - Human Genetics

JF - Human Genetics

SN - 0340-6717

IS - 11-12

ER -