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


Journal

Human genetics
ISSN: 1432-1203
Titre abrégé: Hum Genet
Pays: Germany
ID NLM: 7613873

Informations de publication

Date de publication:
Dec 2019
Historique:
received: 08 07 2019
accepted: 09 09 2019
pubmed: 19 9 2019
medline: 18 12 2019
entrez: 19 9 2019
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 31531740
doi: 10.1007/s00439-019-02062-0
pii: 10.1007/s00439-019-02062-0
pmc: PMC6874520
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1237-1246

Subventions

Organisme : Wellcome Trust
ID : 206194
Pays : United Kingdom

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Auteurs

Richard Milne (R)

Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.
Institute of Public Health, University of Cambridge, Cambridge, UK.

Katherine I Morley (KI)

RAND Europe, Cambridge, UK.
National Addiction Centre, King's College London Institute of Psychiatry, Psychology and Neuroscience, London, UK.
Centre for Epidemiology and Biostatistics, Melbourne School of Global and Population Health, The University of Melbourne, Melbourne, Australia.

Heidi Howard (H)

Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.

Emilia Niemiec (E)

Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.

Dianne Nicol (D)

Centre for Law and Genetics, University of Tasmania, Hobart, Australia.

Christine Critchley (C)

Centre for Law and Genetics, University of Tasmania, Hobart, Australia.
Department of Statistics and Epidemiology, Swinburne University of Technology, Melbourne, Australia.

Barbara Prainsack (B)

Department of Political Science, University of Vienna, Vienna, Austria.
Department of Global Health and Social Medicine, King's College, London, UK.

Danya Vears (D)

Melbourne Law School, University of Melbourne, Parkville, VIC, Australia.
Murdoch Children's Research Institute, Parkville, VIC, Australia.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
Leuven Institute for Human Genomics and Society (LIGAS), KU Leuven, Leuven, Belgium.

James Smith (J)

Web Team, Wellcome Sanger Institute, Wellcome Genome Campus, Cambridge, UK.

Claire Steed (C)

Web Team, Wellcome Sanger Institute, Wellcome Genome Campus, Cambridge, UK.

Paul Bevan (P)

Web Team, Wellcome Sanger Institute, Wellcome Genome Campus, Cambridge, UK.

Jerome Atutornu (J)

Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.
School of Health Sciences, University of Suffolk, Ipswich, UK.

Lauren Farley (L)

Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.

Peter Goodhand (P)

Ontario Institute for Cancer Research, MaRS Centre, Toronto, ON, Canada.

Adrian Thorogood (A)

Centre of Genomics and Policy, McGill University, Montreal, QC, Canada.

Erika Kleiderman (E)

Centre of Genomics and Policy, McGill University, Montreal, QC, Canada.

Anna Middleton (A)

Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK. anna.middleton@wgc.org.uk.
Faculty of Education, University of Cambridge, Cambridge, UK. anna.middleton@wgc.org.uk.

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