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

Abstract

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.

Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals

“…These differences were also associated with several factors including age, educational level, occupation, income and willingness to share genomic data. Importantly, although the majority of patients and informal carers were more willing to share genetic information for research (70% and 67%, respectively) than the general Portuguese population (56%) [ 29 ], the overall proportion of participants who were willing to share was substantially lower than that identified in a study carried out under the EURORDIS Rare Barometer Programme (97%) [ 6 ]. Comparing the benefits and risks of sharing genomic data considered most relevant by the three participant groups may help us to understand these disparities, as well as to provide insights to design and implement genomics research policy proportional to individuals’ expectations and concerns [ 14 ].…”

Open Science Practices in Psychiatric Genetics: A Primer

“…The European Commission Directorate-General for Research and Innovation has called for data “as open as possible and as closed as necessary”: “open” where possible for reuse, but “closed” to protect privacy ( 65 ). Studies of public perception of genomic data sharing in 22 countries demonstrated that attitudes vary on increasing public trust in the process ( 66 ) and willingness to share data with for-profit researchers and medical doctors ( 67 ) in return for results ( 68 ). Thus, we argue that participant safety and wishes must be prioritized and should not be assumed to be universal.…”

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

“…The return of individual results, particularly if perceived as potentially actionable, was a commonly cited example of a specific communication that patients and members of the public wanted, and this was substantiated by other research [209,210]. For some but not all, it was a motivation to donate health data, including genomic data [199]. What is less clear is whether, in the absence of the return of individual results, the need for information could be satisfied by communication on aggregated or global research results.…”