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; Feijao, Carolina; de Freitas, Cláudia; Fernow, Josepine; Goodhand, Peter; Hasan, Qurratulain; Hibino, Aiko; Houeland, Gry; Howard, Heidi C.; Hussain Sheikh, Zakir; Malmgren, Charlotta Ingvoldstad; Izhevskaya, Vera L.; Jędrzejak, Aleksandra; Jinhong, Cao; Kimura, Megumi; Kleiderman, Erika; Liu, Keying; Mascalzoni, Deborah; Mendes, Álvaro; Minari, Jusaku; Nicol, Dianne; Niemiec, Emilia; Patch, Christine; Prainsack, Barbara; Rivière, Marie; Robarts, Lauren; Roberts, Jonathan; Romano, Virginia; Sheerah, Haytham A.; Smith, James; Soulier, Alexandra; Steed, Claire; Stefànsdóttir, Vigdis; Tandre, Cornelia; Thorogood, Adrian; Voigt, Torsten H.; Wang, Nan; Yoshizawa, Go; Middleton, Anna
Peer reviewed, Journal article
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Original versionGenetics in Medicine. 2022, 25 (5), 1120-1129. https://doi.org/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.