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Global Public Perce...
Global Public Perceptions of Genomic Data Sharing : What Shapes the Willingness to Donate DNA and Health Data?
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- Middleton, Anna (author)
- University of Cambridge
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- Milne, Richard (author)
- University of Cambridge
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- Almarri, Mohamed A (author)
- Wellcome Trust Sanger Institute
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- Anwer, Shamim (author)
- Wellcome Trust Sanger Institute
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- Atutornu, Jerome (author)
- Wellcome Trust
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- Baranova, Elena E (author)
- Russian Academy of Education
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- Bevan, Paul (author)
- Wellcome Trust Sanger Institute
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- Cerezo, Maria (author)
- European Bioinformatics Institute
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- Cong, Yali (author)
- Peking University
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- Howard, Heidi C. (author)
- Uppsala University,Lund University,Lunds universitet,Karolinska Institutet,University of Tasmania,Swinburne University of Technology,Medicinsk etik,Sektion II,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Medical Ethics,Section II,Department of Clinical Sciences, Lund,Faculty of Medicine
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- Fernow, Josepine (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik
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- Goodhand, Peter (author)
- Ontario Institute for Cancer Research
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- Hasan, Qurratulain (author)
- Kamineni Hospitals
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- Hibino, Aiko (author)
- Hirosaki University
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- Houeland, Gry (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik
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- Howard, Heidi Carmen (author)
- Uppsala universitet,Centrum för forsknings- och bioetik
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- Hussain, S Zakir (author)
- SAAZ Genetics
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- Ingvoldstad, Charlotta (author)
- Uppsala University,Karolinska Institute,Uppsala universitet,Vårdvetenskap,Livsstil och rehabilitering vid långvarig sjukdom,Department of Molecular Medicine and Surgery, Karolinska Institutet, Solna, Sweden
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- Izhevskaya, Vera L (author)
- Research Centre for Medical Genetics
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- Jędrzejak, Aleksandra (author)
- No affiliation available (private)
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- Jinhong, Cao (author)
- Wuhan University
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- Kimura, Megumi (author)
- Hitotsubashi University
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- Kleiderman, Erika (author)
- McGill University
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- Leach, Brandi (author)
- RAND corporation
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- Liu, Keying (author)
- Peking University
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- Mascalzoni, Deborah, 1973- (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Research
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- Mendes, Álvaro (author)
- Institute for Molecular and Cell Biology
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Minari, Jusaku (author)
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- Wang, Nan (author)
- Peking University
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- Nicol, Dianne (author)
- University of Tasmania
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- Niemiec, Emilia, Dr (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik
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- Patch, Christine (author)
- Queen Mary University
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- Pollard, Jack (author)
- RAND corporation
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- Prainsack, Barbara (author)
- King's College London,University of Vienna
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Rivière, Marie (author)
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Robarts, Lauren (author)
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Roberts, Jonathan (author)
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- Romano, Virginia (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Research
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Sheerah, Haytham A (author)
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- Smith, James (author)
- Wellcome Trust Sanger Institute
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- Soulier, Alexandra (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik
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- Steed, Claire (author)
- Wellcome Trust Sanger Institute
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- Stefànsdóttir, Vigdís (author)
- National University Hospital of Iceland
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- Tandre, Cornelia (author)
- Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik
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- Thorogood, Adrian (author)
- McGill University
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- Voigt, Torsten H (author)
- RWTH Aachen University
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West, Anne V (author)
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Yoshizawa, Go (author)
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- Morley, Katherine I (author)
- RAND corporation,King's College London
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(creator_code:org_t)
- Elsevier BV, 2020
- 2020
- English.
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In: American Journal of Human Genetics. - : Elsevier BV. - 0002-9297 .- 1537-6605. ; 107:4, s. 743-752
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https://urn.kb.se/re...
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https://doi.org/10.1...
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Abstract
Subject headings
Close
- 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.
Subject headings
- SAMHÄLLSVETENSKAP -- Medie- och kommunikationsvetenskap -- Systemvetenskap, informationssystem och informatik med samhällsvetenskaplig inriktning (hsv//swe)
- SOCIAL SCIENCES -- Media and Communications -- Information Systems, Social aspects (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Medicinsk genetik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Medical Genetics (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Medicinsk etik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Medical Ethics (hsv//eng)
Keyword
- attitudes
- data donation
- data sharing
- genomic data
- genomic data sharing
- global
- health data
- public
- survey
- trust
- attitudes
- data donation
- data sharing
- genomic data
- genomic data sharing
- global
- health data
- public
- survey
- trust
Publication and Content Type
- ref (subject category)
- art (subject category)
Find in a library
To the university's database
- By the author/editor
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Middleton, Anna
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Milne, Richard
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Almarri, Mohamed ...
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Anwer, Shamim
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Atutornu, Jerome
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Baranova, Elena ...
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show more...
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Bevan, Paul
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Cerezo, Maria
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Cong, Yali
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Howard, Heidi C.
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Fernow, Josepine
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Goodhand, Peter
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Hasan, Qurratula ...
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Hibino, Aiko
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Houeland, Gry
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Howard, Heidi Ca ...
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Hussain, S Zakir
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Ingvoldstad, Cha ...
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Izhevskaya, Vera ...
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Jędrzejak, Aleks ...
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Jinhong, Cao
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Kimura, Megumi
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Kleiderman, Erik ...
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Leach, Brandi
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Liu, Keying
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Mascalzoni, Debo ...
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Mendes, Álvaro
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Minari, Jusaku
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Wang, Nan
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Nicol, Dianne
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Niemiec, Emilia, ...
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Patch, Christine
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Pollard, Jack
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Prainsack, Barba ...
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Rivière, Marie
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Robarts, Lauren
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Roberts, Jonatha ...
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Romano, Virginia
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Sheerah, Haytham ...
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Smith, James
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Soulier, Alexand ...
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Steed, Claire
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Stefànsdóttir, V ...
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Tandre, Cornelia
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Thorogood, Adria ...
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Voigt, Torsten H
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West, Anne V
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Yoshizawa, Go
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Morley, Katherin ...
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- About the subject
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- SOCIAL SCIENCES
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SOCIAL SCIENCES
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and Media and Commun ...
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and Information Syst ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Health Care Serv ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Basic Medicine
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and Medical Genetics
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Medical Ethics
- Articles in the publication
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American Journal ...
- By the university
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Uppsala University
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Karolinska Institutet
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Lund University