Emma Blanche, Tasha Wainstein, Alivia Dey, GenCOUNSEL Study , Alison M. Elliott
Benefits have been demonstrated to disseminating aggregate research results to all relevant audiences, including study participants. Despite this, many health researchers face barriers in dissemination to broad audiences and returning aggregate results to participants is not commonly practiced. Due to their research presence and training in communication, genetic counselors can lead in implementing best practices in this area. We explored genetic counselors' current practices and opinions regarding educating study participants and wider audiences of research findings. We distributed a survey of 32 multiple-choice and open-ended questions to National Society of Genetics Counselors (NSGC) and Canadian Association of Genetic Counsellors (CAGC) members. Most respondents (90.1%, n = 128/142) identified with a responsibility to disseminate their research findings to a broad audience and identified several associated benefits. All respondents saw value in communicating aggregate results to study participants, although over half (53.2%, n = 66/124) had never done so. Genetic counselors reported resource and knowledge barriers to research dissemination. Despite expertise in education and communication, genetic counselors face similar barriers as other researchers toward broad dissemination of research. Formal training and professional guidelines specific to research dissemination practices will equip genetic counselors to reach broader audiences and maximize the impact of research findings.
Back to Journal of Genetic Counseling