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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.
Highlights
Genomic medicine is being integrated into healthcare in many countries as an emerging basis of clinical care, public health and disease prediction [1]
The multivariable analysis investigated the association between perceptions of DNA information and (i) perceptions of harms associated with linking DNA to other personal information; (ii) willingness to donate DNA for research
Perspective on DNA information was initially modelled as a fixed effect; random slope models were fitted to evaluate whether the associations varied by country of residence
Summary
Genomic medicine is being integrated into healthcare in many countries as an emerging basis of clinical care, public health and disease prediction [1]. The collection and sharing of genomic data is fundamental to this goal, driving research and clinical applications, underpinning the ability to do accurate variant interpretation [2]. Researchers have called for global genomic data sharing, enabling databases to be connected internationally across geographical, legal and policy borders, for databases to be more accessible and to ensure that they better represent the populations
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