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

Authors :
Vera L. Izhevskaya
Gry Houeland
Aleksandra Jędrzejak
Dianne Nicol
Deborah Mascalzoni
Jerome Atutornu
Josepine Fernow
Jack Pollard
Alexandra Soulier
Aiko Hibino
Christine Critchley
Jusaku Minari
Erika Kleiderman
Lauren Robarts
Keying Liu
James Smith
Álvaro Mendes
Adrian Thorogood
Shamim Anwer
Heidi Carmen Howard
Cornelia Tandre
Katherine I. Morley
Virginia Romano
Brandi Leach
Torsten Heinemann
Charlotta Ingvoldstad Malmgren
Paul Bevan
Nan Wang
Anne V. West
Jonathan Roberts
Cao Jinhong
Anna Middleton
Vigdis Stefansdottir
Barbara Prainsack
Christine Patch
Peter Goodhand
Haytham A. Sheerah
Go Yoshizawa
S. Zakir Hussain
Mohamed A. Almarri
Yali Cong
Claire Steed
Emilia Niemiec
Qurratulain Hasan
Maria Cerezo
Richard Milne
Elena E. Baranova
Marie Rivière
Megumi Kimura
DILTEC - Didactique des langues, des textes et des cultures - EA 2288 (DILTEC)
Université Sorbonne Nouvelle - Paris 3
Source :
American Journal of Human Genetics, American Journal of Human Genetics, Elsevier (Cell Press), 2020, ⟨10.1016/j.ajhg.2020.08.023⟩, The American journal of human genetics 107(4), 743-752 (2020). doi:10.1016/j.ajhg.2020.08.023
Publication Year :
2020
Publisher :
Cell Press, 2020.

Abstract

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.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.

Details

Language :
English
ISSN :
00029297 and 15376605
Database :
OpenAIRE
Journal :
American Journal of Human Genetics, American Journal of Human Genetics, Elsevier (Cell Press), 2020, ⟨10.1016/j.ajhg.2020.08.023⟩, The American journal of human genetics 107(4), 743-752 (2020). doi:10.1016/j.ajhg.2020.08.023
Accession number :
edsair.doi.dedup.....072c94135fd2d8d37b9ee4804a4866ef