Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
| Autor: | 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 |
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| Přispěvatelé: | DILTEC - Didactique des langues, des textes et des cultures - EA 2288 (DILTEC), Université Sorbonne Nouvelle - Paris 3 |
| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
0301 basic medicine
Male Health Knowledge Attitudes Practice data sharing health data Disease 030105 genetics & heredity Health data [SHS.HISPHILSO]Humanities and Social Sciences/History Philosophy and Sociology of Sciences data donation Surveys and Questionnaires Genetics (clinical) media_common [SHS.SOCIO]Humanities and Social Sciences/Sociology attitudes public High-Throughput Nucleotide Sequencing Genomics global Europe Donation Female Public Health Psychology Systemvetenskap informationssystem och informatik med samhällsvetenskaplig inriktning Hälso- och sjukvårdsorganisation hälsopolitik och hälsoekonomi Adult Asia media_common.quotation_subject Internet privacy Information Systems Social aspects Trust Article 03 medical and health sciences Perception ddc:570 Genetics Genomic data Humans survey Global perceptions [SDV.GEN]Life Sciences [q-bio]/Genetics business.industry Genome Human Information Dissemination Perspective (graphical) genomic data sharing Australia Health Care Service and Management Health Policy and Services and Health Economy Sequence Analysis DNA [SDV.ETH]Life Sciences [q-bio]/Ethics Data sharing Public perceptions 030104 developmental biology Attitudes Public trust genomic data Americas business Medical ethics |
| Zdroj: | 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 |
| ISSN: | 0002-9297 1537-6605 |
| DOI: | 10.1016/j.ajhg.2020.08.023⟩ |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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