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The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 ( APOL1 ) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members ( n   =  76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs., Conclusions: APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.

Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocation of resources to communicating summary results. De-identified transcripts were used for a directed content analysis. Most biobank participation was altruistic. All participants were not only interested in receiving summary results but also expressed a clear preference for allocating limited funds to conducting additional genetic research. The results suggest that participants have a nuanced view about the allocation of biobank resources to returning summary results, and asking their opinion is a valuable exercise. Researchers may benefit from transparency about research goals and involving biobank participants in decisions about return of summary results.

Few studies or investigators involved in community-engaged research or community-based participatory research have examined awareness and adoption of federal regulatory mechanisms. We conducted a survey of investigators affiliated with the 10 National Institutes of Health (NIH) Centers for Population Health and Health Disparities. A questionnaire designed to capture experience with the conduct and oversight of community-engaged research, and awareness of pertinent regulatory mechanisms, including Federalwide Assurances (FWAs), Individual Investigator Agreements (IIAs), and Institutional Review Board Authorization Agreements (IAAs), was completed by 101 respondents (68% response rate). Although most were aware of FWAs, only a minority of those surveyed reported knowledge of IAAs and IIAs and even fewer had used them in their research with community partners. Implications for future training and oversight are discussed., (© The Author(s) 2014.)

As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents' preferences and perspectives may be specific to their child's disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.

No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with the reconsent process; 365 participants completed the survey. Respondents reported that it was very (69%) or somewhat (21%) important that they were asked for their permission. Many respondents considered alternatives to consent, such as notification-only or opt-out, to be unacceptable (67% and 40%, respectively). These results suggest that re-consent for dbGaP deposition may be advisable in certain cases to anticipate and honor participant preferences.