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

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Middleton, AnnaUniversity of Cambridge (author)

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

Article/chapterEnglish2020

Publisher, publication year, extent ...

Elsevier BV,2020
electronicrdacarrier

Numbers

LIBRIS-ID:oai:DiVA.org:uu-420116
https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-420116URI
https://doi.org/10.1016/j.ajhg.2020.08.023DOI
http://kipublications.ki.se/Default.aspx?queryparsed=id:144879216URI
https://lup.lub.lu.se/record/d46c7913-3b6c-490c-b521-b259b84d1714URI

Supplementary language notes

Language:English
Summary in:English

Part of subdatabase

SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

Notes

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 and genre

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
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

Added entries (persons, corporate bodies, meetings, titles ...)

Milne, RichardUniversity of Cambridge (author)
Almarri, Mohamed AWellcome Trust Sanger Institute (author)
Anwer, ShamimWellcome Trust Sanger Institute (author)
Atutornu, JeromeWellcome Trust (author)
Baranova, Elena ERussian Academy of Education (author)
Bevan, PaulWellcome Trust Sanger Institute (author)
Cerezo, MariaEuropean Bioinformatics Institute (author)
Cong, YaliPeking University (author)
Howard, Heidi C.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(Swepub:lu)he1724ho (author)
Fernow, JosepineUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)josefern (author)
Goodhand, PeterOntario Institute for Cancer Research (author)
Hasan, QurratulainKamineni Hospitals (author)
Hibino, AikoHirosaki University (author)
Houeland, GryUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik (author)
Howard, Heidi CarmenUppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)heiho221 (author)
Hussain, S ZakirSAAZ Genetics (author)
Ingvoldstad, CharlottaUppsala University,Karolinska Institute,Uppsala universitet,Vårdvetenskap,Livsstil och rehabilitering vid långvarig sjukdom,Department of Molecular Medicine and Surgery, Karolinska Institutet, Solna, Sweden(Swepub:uu)cin24816 (author)
Izhevskaya, Vera LResearch Centre for Medical Genetics (author)
Jędrzejak, AleksandraNo affiliation available (private) (author)
Jinhong, CaoWuhan University (author)
Kimura, MegumiHitotsubashi University (author)
Kleiderman, ErikaMcGill University (author)
Leach, BrandiRAND corporation (author)
Liu, KeyingPeking University (author)
Mascalzoni, Deborah,1973-Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Research(Swepub:uu)debma696 (author)
Mendes, ÁlvaroInstitute for Molecular and Cell Biology (author)
Minari, Jusaku (author)
Wang, NanPeking University (author)
Nicol, DianneUniversity of Tasmania (author)
Niemiec, Emilia,DrUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik(Swepub:lu)em7154ni (author)
Patch, ChristineQueen Mary University (author)
Pollard, JackRAND corporation (author)
Prainsack, BarbaraKing's College London,University of Vienna (author)
Rivière, Marie (author)
Robarts, Lauren (author)
Roberts, Jonathan (author)
Romano, VirginiaUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Research(Swepub:uu)virro507 (author)
Sheerah, Haytham A (author)
Smith, JamesWellcome Trust Sanger Institute (author)
Soulier, AlexandraUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)aleso183 (author)
Steed, ClaireWellcome Trust Sanger Institute (author)
Stefànsdóttir, VigdísNational University Hospital of Iceland (author)
Tandre, CorneliaUppsala University,Uppsala universitet,Centrum för forsknings- och bioetik (author)
Thorogood, AdrianMcGill University (author)
Voigt, Torsten HRWTH Aachen University (author)
West, Anne V (author)
Yoshizawa, Go (author)
Morley, Katherine IRAND corporation,King's College London (author)
University of CambridgeWellcome Trust Sanger Institute (creator_code:org_t)

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In:American Journal of Human Genetics: Elsevier BV107:4, s. 743-7520002-92971537-6605

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By the author/editor: Middleton, Anna; Milne, Richard; Almarri, Mohamed ...; Anwer, Shamim; Atutornu, Jerome; Baranova, Elena ...; show more...; Bevan, Paul; Cerezo, Maria; Cong, Yali; Howard, Heidi C.; Fernow, Josepine; Goodhand, Peter; Hasan, Qurratula ...; Hibino, Aiko; Houeland, Gry; Howard, Heidi Ca ...; Hussain, S Zakir; Ingvoldstad, Cha ...; Izhevskaya, Vera ...; Jędrzejak, Aleks ...; Jinhong, Cao; Kimura, Megumi; Kleiderman, Erik ...; Leach, Brandi; Liu, Keying; Mascalzoni, Debo ...; Mendes, Álvaro; Minari, Jusaku; Wang, Nan; Nicol, Dianne; Niemiec, Emilia, ...; Patch, Christine; Pollard, Jack; Prainsack, Barba ...; Rivière, Marie; Robarts, Lauren; Roberts, Jonatha ...; Romano, Virginia; Sheerah, Haytham ...; Smith, James; Soulier, Alexand ...; Steed, Claire; Stefànsdóttir, V ...; Tandre, Cornelia; Thorogood, Adria ...; Voigt, Torsten H; West, Anne V; Yoshizawa, Go; Morley, Katherin ...; show less...

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SOCIAL SCIENCES: SOCIAL SCIENCES; and Media and Commun ...; and Information Syst ...

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Health Care Serv ...

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Basic Medicine; and Medical Genetics

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Medical Ethics

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