Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
Research output: Contribution to journal › Journal article › Research › peer-review
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.
Original language | English |
---|---|
Journal | European Journal of Human Genetics |
Volume | 28 |
Issue number | 4 |
Pages (from-to) | 424-434 |
Number of pages | 11 |
ISSN | 1018-4813 |
DOIs | |
Publication status | Published - 1 Apr 2020 |
Bibliographical 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:
© 2019, The Author(s).
ID: 369540601