Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
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Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. / on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health.
In: Human Genetics, Vol. 138, No. 11-12, 01.12.2019, p. 1237-1246.Research output: Contribution to journal › Journal article › Research › peer-review
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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 -
ID: 369541124