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.

Fig. 1

Participants’ attitudes toward having their privacy protected and advancing research. In separate questions we asked participants how important it is to them to have their privacy protected (n = 228) and to advance research (n = 227). Response categories were collapsed from a 5-point Likert scale to a 4-point scale, anchored by strongly agree (5) to disagree (combining strongly disagree (1) and disagree (2)). The final column, privacy-utility determination (n = 196), represents respondents’ answer when asked to choose which of these, protecting privacy or advancing research, they considered most important.