Journal article

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

Anna Middleton, Richard Milne, Heidi Howard, Emilia Niemiec, Lauren Robarts, Christine Critchley, Dianne Nicol, Barbara Prainsack, Jerome Atutornu, Danya F Vears, James Smith, Claire Steed, Paul Bevan, Erick R Scott, Jason Bobe, Peter Goodhand, Erika Kleiderman, Adrian Thorogood, Katherine I Morley

European Journal of Human Genetics | SPRINGERNATURE | Published : 2020

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 c..

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University of Melbourne Researchers

Grants

Awarded by Wellcome grant


Funding 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 Knoppers. 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.