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

Middleton, Anna ; Milne, Richard ; Almarri, Mohamed A. ; Anwer, Shamim ; Atutornu, Jerome ; Baranova, Elena E. ; Bevan, Paul ; Cerezo, Maria ; Cong, Yali and Critchley, Christine , et al. (2020) In American Journal of Human Genetics 107(4). p.743-752
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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
attitudes, data donation, data sharing, genomic data, genomic data sharing, global, health data, public, survey, trust
in
American Journal of Human Genetics
volume
107
issue
4
pages
10 pages
publisher
Cell Press
external identifiers
  • scopus:85091628814
  • pmid:32946764
ISSN
0002-9297
DOI
10.1016/j.ajhg.2020.08.023
language
English
LU publication?
yes
id
d46c7913-3b6c-490c-b521-b259b84d1714
date added to LUP
2020-10-23 13:59:27
date last changed
2024-05-29 21:05:24
@article{d46c7913-3b6c-490c-b521-b259b84d1714,
  abstract     = {{<p>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.</p>}},
  author       = {{Middleton, Anna and Milne, Richard and Almarri, Mohamed A. and Anwer, Shamim and Atutornu, Jerome and Baranova, Elena E. and Bevan, Paul and Cerezo, Maria and Cong, Yali and Critchley, Christine and Fernow, Josepine and Goodhand, Peter and Hasan, Qurratulain and Hibino, Aiko and Houeland, Gry and Howard, Heidi C. and Hussain, S. Zakir and Malmgren, Charlotta Ingvoldstad and Izhevskaya, Vera L. and Jędrzejak, Aleksandra and Jinhong, Cao and Kimura, Megumi and Kleiderman, Erika and Leach, Brandi and Liu, Keying and Mascalzoni, Deborah and Mendes, Álvaro and Minari, Jusaku and Wang, Nan and Nicol, Dianne and Niemiec, Emilia and Patch, Christine and Pollard, Jack and Prainsack, Barbara and Rivière, Marie and Robarts, Lauren and Roberts, Jonathan and Romano, Virginia and Sheerah, Haytham A. and Smith, James and Soulier, Alexandra and Steed, Claire and Stefànsdóttir, Vigdís and Tandre, Cornelia and Thorogood, Adrian and Voigt, Torsten H. and West, Anne V. and Yoshizawa, Go and Morley, Katherine I.}},
  issn         = {{0002-9297}},
  keywords     = {{attitudes; data donation; data sharing; genomic data; genomic data sharing; global; health data; public; survey; trust}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{743--752}},
  publisher    = {{Cell Press}},
  series       = {{American Journal of Human Genetics}},
  title        = {{Global Public Perceptions of Genomic Data Sharing : What Shapes the Willingness to Donate DNA and Health Data?}},
  url          = {{http://dx.doi.org/10.1016/j.ajhg.2020.08.023}},
  doi          = {{10.1016/j.ajhg.2020.08.023}},
  volume       = {{107}},
  year         = {{2020}},
}