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

Richard Milne*, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Carolina Feijao, Cláudia de Freitas, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, Zakir Hussain Sheikh, Charlotta Ingvoldstad Malmgren, Vera L. IzhevskayaAleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Go Yoshizawa, Anna Middleton

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)

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 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.

Original languageEnglish
Pages (from-to)1120-1129
Number of pages10
JournalGENETICS IN MEDICINE
Volume24
Issue number5
Early online date3 Feb 2022
DOIs
Publication statusPublished - May 2022

Keywords

  • Attitudes
  • Data donation
  • Genomics
  • International
  • Return of results

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