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Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

Middleton, Anna ; Milne, Richard ; Howard, Heidi LU ; Niemiec, Emilia LU ; Robarts, Lauren ; Critchley, Christine ; Nicol, Dianne ; Prainsack, Barbara ; Atutornu, Jerome and Vears, Danya F. , et al. (2020) In European Journal of Human Genetics 28(4). p.424-434
Abstract

Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with... (More)

Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

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publishing date
type
Contribution to journal
publication status
published
subject
in
European Journal of Human Genetics
volume
28
issue
4
pages
11 pages
publisher
Nature Publishing Group
external identifiers
  • scopus:85075920601
  • pmid:31784701
ISSN
1018-4813
DOI
10.1038/s41431-019-0550-y
language
English
LU publication?
no
id
7e388c7f-5b42-401d-a859-d4924913bb5b
date added to LUP
2020-12-03 14:02:45
date last changed
2021-02-19 02:20:58
@article{7e388c7f-5b42-401d-a859-d4924913bb5b,
  abstract     = {<p>Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.</p>},
  author       = {Middleton, Anna and Milne, Richard and Howard, Heidi and Niemiec, Emilia and Robarts, Lauren and Critchley, Christine and Nicol, Dianne and Prainsack, Barbara and Atutornu, Jerome and Vears, Danya F. and Smith, James and Steed, Claire and Bevan, Paul and Scott, Erick R. and Bobe, Jason and Goodhand, Peter and Kleiderman, Erika and Thorogood, Adrian and Morley, Katherine I.},
  issn         = {1018-4813},
  language     = {eng},
  month        = {04},
  number       = {4},
  pages        = {424--434},
  publisher    = {Nature Publishing Group},
  series       = {European Journal of Human Genetics},
  title        = {Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data},
  url          = {http://dx.doi.org/10.1038/s41431-019-0550-y},
  doi          = {10.1038/s41431-019-0550-y},
  volume       = {28},
  year         = {2020},
}