Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Research output: Contribution to journalJournal articleResearchpeer-review

  • Anna Middleton
  • Richard Milne
  • Mohamed A. Almarri
  • Shamim Anwer
  • Jerome Atutornu
  • Elena E. Baranova
  • Paul Bevan
  • Maria Cerezo
  • Yali Cong
  • Christine Critchley
  • Josepine Fernow
  • Peter Goodhand
  • Qurratulain Hasan
  • Aiko Hibino
  • Gry Houeland
  • Heidi C. Howard
  • S. Zakir Hussain
  • Charlotta Ingvoldstad Malmgren
  • Vera L. Izhevskaya
  • Aleksandra Jędrzejak
  • Cao Jinhong
  • Megumi Kimura
  • Erika Kleiderman
  • Brandi Leach
  • Keying Liu
  • Deborah Mascalzoni
  • Álvaro Mendes
  • Jusaku Minari
  • Nan Wang
  • Dianne Nicol
  • Christine Patch
  • Jack Pollard
  • Barbara Prainsack
  • Marie Rivière
  • Lauren Robarts
  • Jonathan Roberts
  • Virginia Romano
  • Haytham A. Sheerah
  • James Smith
  • Alexandra Soulier
  • Claire Steed
  • Vigdís Stefànsdóttir
  • Cornelia Tandre
  • Adrian Thorogood
  • Torsten H. Voigt
  • Anne V. West
  • Go Yoshizawa
  • Katherine I. Morley

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Original languageEnglish
JournalAmerican Journal of Human Genetics
Volume107
Issue number4
Pages (from-to)743-752
Number of pages10
ISSN0002-9297
DOIs
Publication statusPublished - 1 Oct 2020

Bibliographical note

Funding Information:
This work was supported by Wellcome grant 206194 to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. We’d also like to acknowledge the input of Noémie Aubert Bonn, Universiteit Hasselt, Belgium.

Publisher Copyright:
© 2020 The Author(s)

    Research areas

  • attitudes, data donation, data sharing, genomic data, genomic data sharing, global, health data, public, survey, trust

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