TitleGlobal Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
AuthorsMiddleton, Anna
Milne, Richard
Almarri, Mohamed A.
Anwer, Shamim
Atutornu, Jerome
Baranova, Elena E.
Bevan, Paul
Cerezo, Maria
Cong, Yali
Critchley, Christine
Fernow, Josepine
Goodhand, Peter
Hasan, Qurratulain
Hibino, Aiko
Houeland, Gry
Howard, Heidi C.
Hussain, S. Zakir
Malmgren, Charlotta Ingvoldstad
Izhevskaya, Vera L.
Jedrzejak, Aleksandra
Cao Jinhong
Kimura, Megumi
Kleiderman, Erika
Leach, Brandi
Liu, Keying
Mascalzoni, Deborah
Mendes, Alvaro
Minari, Jusaku
Wang, Nan
Nicol, Dianne
Niemiec, Emilia
Patch, Christine
Pollard, Jack
Prainsack, Barbara
Riviere, Marie
Robarts, Lauren
Roberts, Jonathan
Romano, Virginia
Sheerah, Haytham A.
Smith, James
Soulier, Alexandra
Steed, Claire
Stefansdottir, Vigdis
Tandre, Cornelia
Thorogood, Adrian
Voigt, Torsten H.
West, Anne, V
Yoshizawa, Go
Morley, Katherine, I
AffiliationConnecting Sci, Soc & Eth Res Grp, Wellcome Genome Campus, Cambridge CB10 1SA, England
Univ Cambridge, Fac Educ, Cambridge CB2 8PQ, England
Univ Cambridge, Inst Publ Hlth, Cambridge CB2 0SR, England
Wellcome Sanger Inst, Cambridge CB10 1SA, England
Keynote IAS, New Delhi 110060, India
Russian Med Acad Continuous Profess Educ, Moscow 119049, Russia
EMBL EBI, Wellcome Genome Campus, Cambridge CB10 1SA, England
Peking Univ, Hlth Sci Ctr, Med Eth Program, Beijing 100191, Peoples R China
Swinburne Univ Technol, Dept Psychol Sci, Melbourne, Vic 3122, Australia
Univ Tasmania, Ctr Law & Genet, Hobart, Tas 7001, Australia
Uppsala Univ, Ctr Eth & Bioeth, SE-75122 Uppsala, Sweden
MaRS Ctr, Ontario Inst Canc Res, Toronto, ON M5G 0A3, Canada
Kamineni Hosp, Dept Genet & Mol Med, Hyderabad 500068, India
SAAZ Genet, Hyderabad 500033, India
Hirosaki Univ, Fac Humanities & Social Sci, Hirosaki, Aomori 0368560, Japan
Uppsala Univ, Dept Publ Hlth & Caring Sci, S-75122 Uppsala, Sweden
Karolinska Inst, Dept Mol Med & Surg, S-17176 Solna, Sweden
Res Ctr Med Genet, Moscow 115522, Russia
Wuhan Univ, Sch Hlth Sci, Dept Epidemiol & Biostat, Wuhan 430071, Peoples R China
Hitotsubashi Univ, Inst Innovat Res, Tokyo 1868603, Japan
McGill Univ, Ctr Genom & Policy, Montreal, PQ H3A 0G1, Canada
RAND Europe, Cambridge CB4 1YG, England
Osaka Univ, Grad Sch Med, Dept Social Med, Publ Hlth, Suita, Osaka 5650871, Japan
Peking Univ, Hlth Sci Ctr, Sch Publ Hlth, Beijing 100191, Peoples R China
EURAC, Inst Biomed, I-39100 Bolzano, Italy
Univ Porto, I3S Inst Invest & Inovacao Saude, IBMC Inst Mol & Cell Biol, UnIGENe, P-4200135 Porto, Portugal
Univ Porto, I3S Inst Invest & Inovacao Saude, IBMC Inst Mol & Cell Biol, CGPP Ctr Predict & Prevent Genet, P-4200135 Porto, Portugal
Kyoto Univ, Ctr iPS Cell Res & Applicat CiRA, Uehiro Res Div iPS Cell Eth, Kyoto 6068507, Japan
Queen Mary Univ London, Genom England, London EC1M 6BQ, England
Univ Vienna, Dept Polit Sci, A-1010 Vienna, Austria
Kings Coll London, Dept Global Hlth & Social Med, London WC2R 2LS, England
Sorbonne Nouvelle, Diltec, F-75005 Paris, France
Landspitali, IS-101 Reykjavik, Iceland
Rhein Westfal TH Aachen, Inst Sociol, D-52062 Aachen, Germany
Indiana Univ, Maurer Sch Law, Bloomington, IN 47405 USA
Oslo Metropolitan Univ, Work Res Inst AFI, N-0130 Oslo, Norway
Kings Coll London, Inst Psychiat Psychol & Neurosci, London SE5 8AF, England
Univ Melbourne, Ctr Epidemiol & Biostat, Melbourne Sch Global & Populat Hlth, Melbourne, Vic 3010, Australia
Lund Univ, Med Eth, SE-22100 Lund, Sweden
Issue Date1-Oct-2020
AbstractAnalyzing 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.
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