Balancing the Risks and Benefits of Genomic Data Sharing: Genome Research Participants’ Perspectives

Abstract

Background: Technological advancements are rapidly propelling the field of genome research forward, while lawmakers attempt to keep apace with the risks these advances bear. Balancing normative concerns of maximizing data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information to ongoing deliberations. Methods: We conducted a randomized trial of 3 consent types affording varying levels of control over data release decisions. After debriefing participants about the randomization process, we invited them to a follow-up interview to assess their attitudes toward genetic research, privacy and data sharing. Results: Participants were more restrictive in their reported data sharing preferences than in their actual data sharing decisions. They saw both benefits and risks associated with sharing their genomic data, but risks were seen as less concrete or happening in the future, and were largely outweighed by purported benefits. Conclusion: Policymakers must respect that participants’ assessment of the risks and benefits of data sharing and their privacy-utility determinations, which are associated with their final data release decisions, vary. In order to advance the ethical conduct of genome research, proposed policy changes should carefully consider these stakeholder perspectives.

Pediatric Data Sharing in Genomic Research: Attitudes and Preferences of Parents

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“…Interviews lasted ∼45 minutes and were transcribed verbatim. More details on the interview and development of the questionnaire can be found in Oliver et al 14 The autism and epilepsy studies also enrolled family members to serve as matched case controls (n = 25). All family members were randomly assigned to the same experimental ICD (treated as distinct consent choices), and all family members present typically contributed to 1 structured interview.…”

Respecting Autonomy Over Time: Policy and Empirical Evidence on Re‐Consent in Longitudinal Biomedical Research

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Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

“…Evidence regarding public awareness of confidentiality risks is conflicting (Kaufman et al, 2009;Brothers et al, 2011;Oliver et al, 2011;Trinidad et al, 2012;Rogith et al, 2014). A survey study (N = 1041) about consent to a hypothetical biobank found that 75% of participants disapproved of using their genetic material because of security concerns (Kerath et al, 2013).…”