Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study

Abstract

Introduction Studies have found that people are interested in receiving their individual research results (IRRs) in exchange for participating in genetic studies. However, it is unclear whether the public understands the nature and limitations of these results and whether they would want information with little or no clinical utility. Methods We conducted 10 focus groups in three U.S. cities to examine the types of results they would want to learn, the perceived value of results with little or no clinical utility, and how individuals might prioritize the value of different types of IRRs. Findings Nearly all focus group participants said they would want at least some IRRs returned. Priority was placed on results that are well understood. Less important to participants were magnitude of the risk conferred and actionability of the result. In addition to wanting results that will help treat or prevent disease, participants identified other potential clinical and personal reasons for wanting IRRs. Many believed the study had an obligation to return IRRs and that the study should trade off sample size to meet the perceived obligation of returning results. Although most people would prefer to receive as much information as possible, many were willing to accept the return of a limited set of results in exchange for their participation. Conclusions Members of the public understood the nuances and limitations that are likely to apply to most IRRs. Researchers and others deciding the value of returning a given result should not base their decision on actionability of the information alone. Rather, they should consider broadening their definition of clinical utility to include the possible personal utility of information.

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

“…We have previously published the results of our focus groups with participants of this DNA biobank, who were primarily Hispanic and African American, and found that the reasons expressed for participation were similar to those previously reported in primarily White biobank participants, particularly altruism and an expectation of personal health benefit (Streicher et al 2011). As noted by others, quantitative data on this topic would be useful to complement the previous qualitative studies that have been conducted (Bollinger et al 2012). Our aims in the present study were therefore as follows:…”

“…A handful of studies addressing interest in receiving personal results specifically from genomics research in diverse populations using a focus group methodological approach have recently been conducted (Bollinger et al 2012;O'Daniel and Haga 2011). One of these studies suggested that individuals from diverse backgrounds seem interested in receiving personal results from genomics research (Bollinger et al 2012).…”

“…One of these studies suggested that individuals from diverse backgrounds seem interested in receiving personal results from genomics research (Bollinger et al 2012). Additionally, a large online survey of US adults suggested that providing individual research results is a strong motivation to individuals to participate in genomics research, and that there were few differences among demographic groups (Kaufman et al 2008).…”

The Ever-Evolving Concept of Clinical Significance and the Potential for Sins of Omission in Genetic Research

“…This would be counterbalanced by an increased emphasis on the uncertainty associated with almost all genetic variants. Such an approach would be consistent with recent consensus statements (e.g., National Cancer Institute 2010) and empirical reports (e.g., Bollinger et al 2012) that downplay the importance of "actionability." Nor would all reportable variants need to be as certain, or associated with a condition as severe, as the mutation causing Huntington disease.…”

Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach

“…In addition, individual results may be offered results if other conditions are met (National Heart Lung Blood Institute working group et al 2010). Since then, studies have identified support for disclosing personal genomic results from genomic study participants (Allen et al 2014;Bollinger et al 2012;Halverson and Ross 2012;Overby et al 2015;Trinidad et al 2015), researchers (Appelbaum et al 2015;Meacham et al 2010), IRB committee members (Beskow and O'Rourke 2015;Dressler et al 2012), ethicists and lawyers (Burke et al 2014;Evans 2014;Thorogood et al 2014;Wolf et al 2015), and two genomics research networks ). In addition, NHLBI (2010) recommended that Binvestigators conducting research with identifiable communities should engage the community on the return of aggregate and/or individual research results^, and other researchers concurred (Lemke et al 2012;Marsh et al 2013;Overby et al 2015;Trinidad et al 2015).…”