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

Anna Middleton 1, Richard Milne 2, Mohamed A Almarri 3, Shamim Anwer 4, Jerome Atutornu 5, Elena E Baranova 6, Paul Bevan 3, Maria Cerezo 7, Yali Cong 8, Christine Critchley 9, Josepine Fernow 10, Peter Goodhand 11, Qurratulain Hasan 12, Aiko Hibino 13, Gry Houeland 10, Heidi C Howard 14, S Zakir Hussain 15, Charlotta Ingvoldstad Malmgren 16, Vera L Izhevskaya 17, Aleksandra Jędrzejak 18, Cao Jinhong 19, Megumi Kimura 20, Erika Kleiderman 21, Brandi Leach 22, Keying Liu 23, Deborah Mascalzoni 24, Álvaro Mendes 25, Jusaku Minari 26, Nan Wang 8, Dianne Nicol 27, Emilia Niemiec 10, Christine Patch 28, Jack Pollard 22, Barbara Prainsack 29, Marie Rivière 30, Lauren Robarts 5, Jonathan Roberts 5, Virginia Romano 31, Haytham A Sheerah 32, James Smith 3, Alexandra Soulier 10, Claire Steed 3, Vigdís Stefànsdóttir 33, Cornelia Tandre 10, Adrian Thorogood 21, Torsten H Voigt 34, Anne V West 35, Go Yoshizawa 36, Katherine I Morley 37

Affiliations

PMID: 32946764
DOI: 10.1016/j.ajhg.2020.08.023

Free article

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.

Keywords: attitudes; data donation; data sharing; genomic data; genomic data sharing; global; health data; public; survey; trust.