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

Milne, Richard ; Morley, Katherine I. ; Howard, Heidi LU ; Niemiec, Emilia LU ; Nicol, Dianne ; Critchley, Christine ; Prainsack, Barbara ; Vears, Danya ; Smith, James and Steed, Claire , et al. (2019) In Human Genetics 138(11-12). p.1237-1246
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... (More)

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.

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publishing date
type
Contribution to journal
publication status
published
subject
keywords
Data sharing, Donation, Genome, Public, Survey, Trust
in
Human Genetics
volume
138
issue
11-12
pages
10 pages
publisher
Springer
external identifiers
  • pmid:31531740
  • scopus:85073812224
ISSN
0340-6717
DOI
10.1007/s00439-019-02062-0
language
English
LU publication?
no
id
c70c34b9-cfea-4026-96ee-f90d6c4dd25d
date added to LUP
2020-12-03 14:13:38
date last changed
2021-02-23 02:17:27
@article{c70c34b9-cfea-4026-96ee-f90d6c4dd25d,
  abstract     = {<p>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.</p>},
  author       = {Milne, Richard and Morley, Katherine I. and Howard, Heidi and Niemiec, Emilia and Nicol, Dianne and Critchley, Christine and Prainsack, Barbara and Vears, Danya and Smith, James and Steed, Claire and Bevan, Paul and Atutornu, Jerome and Farley, Lauren and Goodhand, Peter and Thorogood, Adrian and Kleiderman, Erika and Middleton, Anna},
  issn         = {0340-6717},
  language     = {eng},
  month        = {12},
  number       = {11-12},
  pages        = {1237--1246},
  publisher    = {Springer},
  series       = {Human Genetics},
  title        = {Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia},
  url          = {http://dx.doi.org/10.1007/s00439-019-02062-0},
  doi          = {10.1007/s00439-019-02062-0},
  volume       = {138},
  year         = {2019},
}