Middleton, Anna, Milne, Richard, Howard, Heidi, Niemiec, Emilia, Robarts, Laurens, Critchley, Christine, Nicol, Dianne, Prainsack, Barbara, Atutornu, Jerome, Vears, Danya. F., Smith, James, Steed, Claire, Bevan, Paul, Scott, Erick. R., Bobe, Jason, Goodhand, Peter, Kleiderman, Erika, Thorogood, Adrian and Morley, Katherine. I. (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 (28). pp. 424-434. ISSN 1018-4813

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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 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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