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Return of genomic results does not motivate intent to participate in research for all : Perspectives across 22 countries

Milne, Richard ; Morley, Katherine I. ; Almarri, Mohamed A. ; Atutornu, Jerome ; Baranova, Elena E. ; Bevan, Paul ; Cerezo, Maria ; Cong, Yali ; Costa, Alessia and Feijao, Carolina , et al. (2022) In Genetics in Medicine 24(5). p.1120-1129
Abstract

Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic... (More)

Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Attitudes, Data donation, Genomics, International, Return of results
in
Genetics in Medicine
volume
24
issue
5
pages
1120 - 1129
publisher
Nature Publishing Group
external identifiers
  • pmid:35125311
  • scopus:85124015446
ISSN
1098-3600
DOI
10.1016/j.gim.2022.01.002
language
English
LU publication?
yes
additional info
Publisher Copyright: © 2022 The Authors
id
f357daa6-926e-4708-a3e5-a2733612c86c
date added to LUP
2022-03-31 19:23:59
date last changed
2024-06-23 02:12:23
@article{f357daa6-926e-4708-a3e5-a2733612c86c,
  abstract     = {{<p>Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered.</p>}},
  author       = {{Milne, Richard and Morley, Katherine I. and Almarri, Mohamed A. and Atutornu, Jerome and Baranova, Elena E. and Bevan, Paul and Cerezo, Maria and Cong, Yali and Costa, Alessia and Feijao, Carolina and de Freitas, Cláudia and Fernow, Josepine and Goodhand, Peter and Hasan, Qurratulain and Hibino, Aiko and Houeland, Gry and Howard, Heidi C. and Hussain Sheikh, Zakir and Malmgren, Charlotta Ingvoldstad and Izhevskaya, Vera L. and Jędrzejak, Aleksandra and Jinhong, Cao and Kimura, Megumi and Kleiderman, Erika and Liu, Keying and Mascalzoni, Deborah and Mendes, Álvaro and Minari, Jusaku and Nicol, Dianne and Niemiec, Emilia and Patch, Christine 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, Vigdis and Tandre, Cornelia and Thorogood, Adrian and Voigt, Torsten H. and Wang, Nan and Yoshizawa, Go and Middleton, Anna}},
  issn         = {{1098-3600}},
  keywords     = {{Attitudes; Data donation; Genomics; International; Return of results}},
  language     = {{eng}},
  number       = {{5}},
  pages        = {{1120--1129}},
  publisher    = {{Nature Publishing Group}},
  series       = {{Genetics in Medicine}},
  title        = {{Return of genomic results does not motivate intent to participate in research for all : Perspectives across 22 countries}},
  url          = {{http://dx.doi.org/10.1016/j.gim.2022.01.002}},
  doi          = {{10.1016/j.gim.2022.01.002}},
  volume       = {{24}},
  year         = {{2022}},
}