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

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Standard

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; Critchley, Christine; Fernow, Josepine; Goodhand, Peter; Hasan, Qurratulain; Hibino, Aiko; Houeland, Gry; Howard, Heidi C.; Hussain, S. Zakir; Malmgren, Charlotta Ingvoldstad; Izhevskaya, Vera L.; Jędrzejak, Aleksandra; Jinhong, Cao; Kimura, Megumi; Kleiderman, Erika; Leach, Brandi; Liu, Keying; Mascalzoni, Deborah; Mendes, Álvaro; Minari, Jusaku; Wang, Nan; Nicol, Dianne; Niemiec, Emilia; Patch, Christine; Pollard, Jack; Prainsack, Barbara; Rivière, Marie; Robarts, Lauren; Roberts, Jonathan; Romano, Virginia; Sheerah, Haytham A.; Smith, James; Soulier, Alexandra; Steed, Claire; Stefànsdóttir, Vigdís; Tandre, Cornelia; Thorogood, Adrian; Voigt, Torsten H.; West, Anne V.; Yoshizawa, Go; Morley, Katherine I.

I: American Journal of Human Genetics, Bind 107, Nr. 4, 01.10.2020, s. 743-752.

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Harvard

Middleton, A, Milne, R, Almarri, MA, Anwer, S, Atutornu, J, Baranova, EE, Bevan, P, Cerezo, M, Cong, Y, Critchley, C, Fernow, J, Goodhand, P, Hasan, Q, Hibino, A, Houeland, G, Howard, HC, Hussain, SZ, Malmgren, CI, Izhevskaya, VL, Jędrzejak, A, Jinhong, C, Kimura, M, Kleiderman, E, Leach, B, Liu, K, Mascalzoni, D, Mendes, Á, Minari, J, Wang, N, Nicol, D, Niemiec, E, Patch, C, Pollard, J, Prainsack, B, Rivière, M, Robarts, L, Roberts, J, Romano, V, Sheerah, HA, Smith, J, Soulier, A, Steed, C, Stefànsdóttir, V, Tandre, C, Thorogood, A, Voigt, TH, West, AV, Yoshizawa, G & Morley, KI 2020, 'Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?', American Journal of Human Genetics, bind 107, nr. 4, s. 743-752. https://doi.org/10.1016/j.ajhg.2020.08.023

APA

Middleton, A., Milne, R., Almarri, M. A., Anwer, S., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Critchley, C., Fernow, J., Goodhand, P., Hasan, Q., Hibino, A., Houeland, G., Howard, H. C., Hussain, S. Z., Malmgren, C. I., Izhevskaya, V. L., ... Morley, K. I. (2020). Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data? American Journal of Human Genetics, 107(4), 743-752. https://doi.org/10.1016/j.ajhg.2020.08.023

Vancouver

Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE o.a. Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data? American Journal of Human Genetics. 2020 okt. 1;107(4):743-752. https://doi.org/10.1016/j.ajhg.2020.08.023

Author

Middleton, 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. ; Jędrzejak, Aleksandra ; Jinhong, Cao ; Kimura, Megumi ; Kleiderman, Erika ; Leach, Brandi ; Liu, Keying ; Mascalzoni, Deborah ; Mendes, Álvaro ; Minari, Jusaku ; Wang, Nan ; Nicol, Dianne ; Niemiec, Emilia ; Patch, Christine ; Pollard, Jack ; Prainsack, Barbara ; Rivière, Marie ; Robarts, Lauren ; Roberts, Jonathan ; Romano, Virginia ; Sheerah, Haytham A. ; Smith, James ; Soulier, Alexandra ; Steed, Claire ; Stefànsdóttir, Vigdís ; Tandre, Cornelia ; Thorogood, Adrian ; Voigt, Torsten H. ; West, Anne V. ; Yoshizawa, Go ; Morley, Katherine I. / Global Public Perceptions of Genomic Data Sharing : What Shapes the Willingness to Donate DNA and Health Data?. I: American Journal of Human Genetics. 2020 ; Bind 107, Nr. 4. s. 743-752.

Bibtex

@article{4d2b0a7be7a6457ca68538fd8ab942c2,
title = "Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?",
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 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.",
keywords = "attitudes, data donation, data sharing, genomic data, genomic data sharing, global, health data, public, survey, trust",
author = "Anna Middleton and Richard Milne and Almarri, {Mohamed A.} and Shamim Anwer and Jerome Atutornu and Baranova, {Elena E.} and Paul Bevan and Maria Cerezo and Yali Cong and Christine Critchley and Josepine Fernow and Peter Goodhand and Qurratulain Hasan and Aiko Hibino and Gry Houeland and Howard, {Heidi C.} and Hussain, {S. Zakir} and Malmgren, {Charlotta Ingvoldstad} and Izhevskaya, {Vera L.} and Aleksandra J{\c e}drzejak and Cao Jinhong and Megumi Kimura and Erika Kleiderman and Brandi Leach and Keying Liu and Deborah Mascalzoni and {\'A}lvaro Mendes and Jusaku Minari and Nan Wang and Dianne Nicol and Emilia Niemiec and Christine Patch and Jack Pollard and Barbara Prainsack and Marie Rivi{\`e}re and Lauren Robarts and Jonathan Roberts and Virginia Romano and Sheerah, {Haytham A.} and James Smith and Alexandra Soulier and Claire Steed and Vigd{\'i}s Stef{\`a}nsd{\'o}ttir and Cornelia Tandre and Adrian Thorogood and Voigt, {Torsten H.} and West, {Anne V.} and Go Yoshizawa and Morley, {Katherine I.}",
note = "Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. We{\textquoteright}d also like to acknowledge the input of No{\'e}mie Aubert Bonn, Universiteit Hasselt, Belgium. Publisher Copyright: {\textcopyright} 2020 The Author(s)",
year = "2020",
month = oct,
day = "1",
doi = "10.1016/j.ajhg.2020.08.023",
language = "English",
volume = "107",
pages = "743--752",
journal = "American Journal of Human Genetics",
issn = "0002-9297",
publisher = "Cell Press",
number = "4",

}

RIS

TY - JOUR

T1 - Global Public Perceptions of Genomic Data Sharing

T2 - What Shapes the Willingness to Donate DNA and Health Data?

AU - Middleton, Anna

AU - Milne, Richard

AU - Almarri, Mohamed A.

AU - Anwer, Shamim

AU - Atutornu, Jerome

AU - Baranova, Elena E.

AU - Bevan, Paul

AU - Cerezo, Maria

AU - Cong, Yali

AU - Critchley, Christine

AU - Fernow, Josepine

AU - Goodhand, Peter

AU - Hasan, Qurratulain

AU - Hibino, Aiko

AU - Houeland, Gry

AU - Howard, Heidi C.

AU - Hussain, S. Zakir

AU - Malmgren, Charlotta Ingvoldstad

AU - Izhevskaya, Vera L.

AU - Jędrzejak, Aleksandra

AU - Jinhong, Cao

AU - Kimura, Megumi

AU - Kleiderman, Erika

AU - Leach, Brandi

AU - Liu, Keying

AU - Mascalzoni, Deborah

AU - Mendes, Álvaro

AU - Minari, Jusaku

AU - Wang, Nan

AU - Nicol, Dianne

AU - Niemiec, Emilia

AU - Patch, Christine

AU - Pollard, Jack

AU - Prainsack, Barbara

AU - Rivière, Marie

AU - Robarts, Lauren

AU - Roberts, Jonathan

AU - Romano, Virginia

AU - Sheerah, Haytham A.

AU - Smith, James

AU - Soulier, Alexandra

AU - Steed, Claire

AU - Stefànsdóttir, Vigdís

AU - Tandre, Cornelia

AU - Thorogood, Adrian

AU - Voigt, Torsten H.

AU - West, Anne V.

AU - Yoshizawa, Go

AU - Morley, Katherine I.

N1 - Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. We’d also like to acknowledge the input of Noémie Aubert Bonn, Universiteit Hasselt, Belgium. Publisher Copyright: © 2020 The Author(s)

PY - 2020/10/1

Y1 - 2020/10/1

N2 - 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.

AB - 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.

KW - attitudes

KW - data donation

KW - data sharing

KW - genomic data

KW - genomic data sharing

KW - global

KW - health data

KW - public

KW - survey

KW - trust

UR - http://www.scopus.com/inward/record.url?scp=85091628814&partnerID=8YFLogxK

U2 - 10.1016/j.ajhg.2020.08.023

DO - 10.1016/j.ajhg.2020.08.023

M3 - Journal article

C2 - 32946764

AN - SCOPUS:85091628814

VL - 107

SP - 743

EP - 752

JO - American Journal of Human Genetics

JF - American Journal of Human Genetics

SN - 0002-9297

IS - 4

ER -

ID: 369539675