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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Standard

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

Harvard

on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health 2020, 'Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data', European Journal of Human Genetics, bind 28, nr. 4, s. 424-434. https://doi.org/10.1038/s41431-019-0550-y

APA

on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health (2020). Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. European Journal of Human Genetics, 28(4), 424-434. https://doi.org/10.1038/s41431-019-0550-y

Vancouver

on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health. Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. European Journal of Human Genetics. 2020 apr. 1;28(4):424-434. https://doi.org/10.1038/s41431-019-0550-y

Author

on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health. / Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. I: European Journal of Human Genetics. 2020 ; Bind 28, Nr. 4. s. 424-434.

Bibtex

@article{06975fb0866f446497eddeb90da22ad4,
title = "Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data",
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 {\textquoteleft}exceptionalist{\textquoteright} views about genetics (i.e., believed DNA is different or {\textquoteleft}special{\textquoteright} 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.",
author = "Anna Middleton and Richard Milne and Heidi Howard and Emilia Niemiec and Lauren Robarts and Christine Critchley and Dianne Nicol and Barbara Prainsack and Jerome Atutornu and Vears, {Danya F.} and James Smith and Claire Steed and Paul Bevan and Scott, {Erick R.} and Jason Bobe and Peter Goodhand and Erika Kleiderman and Adrian Thorogood and Morley, {Katherine I.} and {on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health}",
note = "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: {\textcopyright} 2019, The Author(s).",
year = "2020",
month = apr,
day = "1",
doi = "10.1038/s41431-019-0550-y",
language = "English",
volume = "28",
pages = "424--434",
journal = "European Journal of Human Genetics",
issn = "1018-4813",
publisher = "nature publishing group",
number = "4",

}

RIS

TY - JOUR

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