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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


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Middleton, A, Milne, R, Howard, H, Niemiec, E, Robarts, L, Critchley, C, Nicol, D ORCID: 0000-0002-6553-2839, Prainsack, B, Atutornu, J, Vears, DF, Smith, J, Steed, C, Bevan, P, Scott, ER, Bobe, J, Goodhand, P, Kleiderman, E, Thorogood, A and Morley, KI 2019 , '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 , pp. 1-11 , doi: 10.1038/s41431-019-0550-y.

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Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharingpertains to the perceived similarities and differences between DNA and other forms of personal data. It explores theperceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNAand 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 hadpersonal experience with genomics and to perceive DNA information as having personal as well as clinical and scientificvalue. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to bewilling to donate their anonymous DNA and medical information for research than other respondents. Perceived harms fromre-identification did not appear to dissuade publics from being willing to participate in research. The interplay betweenexceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focusfor future research.

Item Type: Article
Authors/Creators:Middleton, A and Milne, R and Howard, H and Niemiec, E and Robarts, L and Critchley, C and Nicol, D and Prainsack, B and Atutornu, J and Vears, DF and Smith, J and Steed, C and Bevan, P and Scott, ER and Bobe, J and Goodhand, P and Kleiderman, E and Thorogood, A and Morley, KI
Keywords: genomic data sharing, genetic exceptionalism, public survey
Journal or Publication Title: European Journal of Human Genetics
Publisher: Nature Publishing Group
ISSN: 1476-5438
DOI / ID Number: 10.1038/s41431-019-0550-y
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Copyright 2019 the authors. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0)

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