Public preferences for the return of research results in genetic research: a conjoint analysis

Abstract

Purpose Recent policies specifying criteria about which individual research results (IRRs) to return leave considerable discretion to researchers. This study investigated which types of results the public wants when participating in genetic research and whether preferences differ based on willingness to participate. Methods A representative survey of U.S. adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using twelve tasks where respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research. Results Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all p<0.003) with priority placed on providing results at no cost, and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (p=0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (p=0.35). Conclusion Public preferences for well-validated IRRs for serious, actionable diseases agree with emerging recommendations. However, since preferences for receiving IRRs vary, some choices should be offered to research participants.

Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants’ Genomic Results

“…Although 7% (n = 35) of the relatives and controls reported having had a cancer during the interval between baseline (1998) and this survey (2013), cancer status at the last follow-up was not significant in any of the scenarios (results not shown) and is unlikely to account for the lack of differences between these 3 groups. Further, our findings are similar to other studies showing that research participants favor the return of individual results [17][18][19][20][21]. Nevertheless, in the light of the borderline statistical significance for the casecontrol comparison in scenarios 2 and 3, we cannot exclude that lack of statistical power limited our ability to find case-control differences.…”

“…Most groups involved in genetic research agree that individual genetic findings that are highly penetrant (highly related to outcomes) and clinically actionable (useful in clinical practice) should be returned to the participant [17][18][19][20][21][22][23][24], although several studies have found that many researchers do not return results even if they be- lieve that they should [25][26][27]. The most commonly cited reasons for not returning individual research results were expecting participants would have difficulty understanding the results, trouble contacting participants, or not considering the option [27].…”

Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment

“…Such an endeavour will require research into the best way to communicate the range of possible inci dental findings. 23 In relation to the statement of the American College of Medical Genetics and Genomics working group, 5 we found support for returning 30 However, that study did not examine willingness to pay or uptake of scen arios related to the statement of the working group. 5 Furthermore, it did not explicitly examine tradeoffs for returning results that did and did not have medical treatment available.…”

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

“…that the majority of participants would welcome the opportunity to receive at least some results as a tangible benefit of participation, particularly if the results were validated and clinically actionable (Murphy-Bollinger et al, 2014;Siminoff et al, 2016). In fact, 40% of participants erroneously believed that they would receive information about their loved one's health from the GTEx project (Siminoff et al, 2016).…”