Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Research output: Contribution to journal › Journal article › Research › peer-review
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 language | English |
|---|---|
| Journal | Genetics in Medicine |
| Volume | 24 |
| Issue number | 5 |
| Pages (from-to) | 1120-1129 |
| Number of pages | 10 |
| ISSN | 1098-3600 |
| DOIs | |
| Publication status | Published - May 2022 |
| Externally published | Yes |
Bibliographical note
Funding Information:
This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.
Funding Information:
This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus. Conceptualisation: A.Mi.; Data Curation: P.B. J.S. C.S. L.R.; Formal Analysis: C.F. K.I.M. R.M.; Funding Acquisition: A.Mi. P.G. E.K.; Investigation: A.Mi. M.A.A. E.E.B. M.C. Y.C. J.F. G.H. Q.H. H.C.H. C.I.M. V.L.I. A.J. C.J. K.L. D.M. A.Me. J.M. D.N. E.N. B.P. M.R. V.R. H.A.S. A.S. V.S. C.T. T.H.V. N.W. G.Y.; Methodology: A.Mi. H.C.H. E.N.; Project Administration: L.R.; Resources: P.B. C.S. J.S.; Supervision: A.M.; Visualization: C.F. K.I.M.; Writing-original draft: R.M. A.M.; Writing-review and editing: A.Mi. J.A. A.C. C.d.F. A.H. H.C.H. M.K. D.M. A.Me. J.M. E.N. B.P. C.P. A.T. T.H.V. The online survey is fully anonymous. Participants are informed that their consent is given when they choose to click off the landing page and start answering the questions. On the landing page, the purpose of the project and what participation involves are explained, and participants have a choice at any stage within the survey to stop answering the questions and withdraw. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. As part of the conditions of research delivery at this research institution the project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration number: 16/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement and data collection and storage. This ethics approval was sufficient to cover recruitment into the online survey for most of the collaborators attached to the project, with the exception of Australia, whereby the University of Tasmania required an additional local Institutional Review Board process to be completed in addition to their own separate consent form adding onto the landing page of the survey for Australian participants only. The study was approved by the Tasmanian Social Sciences Human Research Ethics Committee on the July 5, 2017 (reference number H0016682). This research conformed to the Declaration of Helsinki.
Publisher Copyright:
© 2022 The Authors
- Attitudes, Data donation, Genomics, International, Return of results
Research areas
ID: 369539180