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, et al.

ResearchPosted on rand.org Feb 8, 2022Published in: Genetics in Medicine (2022). doi: 10.1016/j.gim.2022.01.002

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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Document Details

  • Copyright: 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. Izhevskaya, Aleksandra Jedrzejak, 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
  • Publisher: Elsevier Inc
  • Availability: Non-RAND
  • Year: 2022
  • Pages: 10
  • Document Number: EP-68843

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