Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
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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. / on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health.
I: European Journal of Human Genetics, Bind 28, Nr. 4, 01.04.2020, s. 424-434.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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T1 - Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
AU - Middleton, Anna
AU - Milne, Richard
AU - Howard, Heidi
AU - Niemiec, Emilia
AU - Robarts, Lauren
AU - Critchley, Christine
AU - Nicol, Dianne
AU - Prainsack, Barbara
AU - Atutornu, Jerome
AU - Vears, Danya F.
AU - Smith, James
AU - Steed, Claire
AU - Bevan, Paul
AU - Scott, Erick R.
AU - Bobe, Jason
AU - Goodhand, Peter
AU - Kleiderman, Erika
AU - Thorogood, Adrian
AU - Morley, Katherine I.
AU - on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health
N1 - Funding Information: Acknowledgements This work was supported by Wellcome grant [206194] to the Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge, UK. We would like to thank the following people from GA4GH for their encouragement and infrastructure support: Peter Goodhand, Julia Wilson, Bartha Knop-pers. 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). DV acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Programme. Publisher Copyright: © 2019, The Author(s).
PY - 2020/4/1
Y1 - 2020/4/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85075920601&partnerID=8YFLogxK
U2 - 10.1038/s41431-019-0550-y
DO - 10.1038/s41431-019-0550-y
M3 - Journal article
C2 - 31784701
AN - SCOPUS:85075920601
VL - 28
SP - 424
EP - 434
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
SN - 1018-4813
IS - 4
ER -
ID: 369540601