Abstract:
The return of individual research results (IRRs) has become a controversial topic within the genetics research community. Despite published policy papers and professional symposia on this issue, little consensus on the process has been achieved. Genetic counselors are the medical professionals often responsible for coordinating disclosure of results in the context of genetic research. However, the attitudes, opinions and experiences of genetic counselors related to disclosure of IRRs have yet to be examined. The goal of this study was to assess the opinions and experiences of genetic counselors regarding the return of research results to study participants. Our hypothesis was that opinions would vary significantly among counselors with respect to both the types of results that should be disclosed and the process to be followed. In particular, we hypothesized that counselors with more experience returning IRRs would feel more strongly in favor of returning these results than counselors with no experience returning IRRs. We also hypothesized that counselors would feel more strongly in favor of returning clinically actionable results than other types of results. We conducted an anonymous online survey of 163 genetic counselors recruited via the National Society of Genetic Counselors (NSGC) listserv. The survey respondents varied widely in their opinions about and experiences with the process of disclosing IRRs. However, our results showed that genetic counselors were more strongly in favor of returning clinically actionable results and results with reproductive implications. In addition, the provision of informed consent as well as CLIA confirmation were important factors for counselors when considering return of IRRs. Future efforts should focus on developing a consensus among genetic counselors and the research community for recommendations on the process of handling IRRs.
