Before this article, most of the co-authors had not worked together. We quickly realized that we had similar reasons for joining and leading a Special Interest Group (SIG) through NSGC, which included creating networks, making friends across the country and around the globe, acquiring leadership skills, increasing knowledge, and developing resources. We also learned that we shared common challenges, such as feeling burnt out and seeking support for volunteer engagement. In response to these commonalities, we decided to survey SIG leadership about their experiences with SIG engagement and Justice, Equity, Diversity, and Inclusion (J.E.D.I) initiatives. Forty-two SIG leaders responded to the survey, 86% of the established SIGs. For a summary of the data, please see this link.

Although SIGs vary in terms of goals and processes, all SIGs are comprised of individuals with shared interests. Given the rapid evolution of our field, members rely on SIGs for their individualized expertise, resources, and comradery. SIG leaders reported that their most successful activities were hosting educational webinars, developing practical resources, and providing a space for discussion. The majority of respondents reported already integrating J.E.D.I. initiatives into their SIG activities. However, issues impacting overall SIG engagement (such as volunteer bandwidth and lack of time, combined with funding issues and inability to prioritize goals) made the J.E.D.I. integration difficult. Many SIG leaders reported feelings of isolation, burnout, and being assigned to lead J.E.D.I. initiatives because they were from marginalized groups.

In 2021, The Exeter Group report exposed a need for greater integration of J.E.D.I. initiatives within NSGC. SIG leaders embraced the responsibility of implementing the strategic recommendations outlined by The Exeter Group and have begun the implementation process. However, progress will not be made in isolation; thus, we asked for resources and direction from NSGC. There were multiple ideas regarding how to improve volunteer engagement. The most common suggestion focused on the need for a structured communication framework between SIGs and NSGC leadership, and the possible inclusion of a J.E.D.I representative from each SIG. This would provide a direct line for collaboration and eliminate duplication of efforts across SIGs and other NSGC committees. Other suggestions included J.E.D.I. training and certification opportunities, funding for volunteer incentives, and the hiring of staff outside of NSGC to focus on J.E.D.I. initiatives for SIGs and the entire NSGC membership. At the time of this column’s writing, a SIG Task Force is actively working on some of these ideas and we look forward to their recommendations.

Ultimately, with over 6,000 SIG memberships, SIGs form the heart of engagement within our professional society. Working in unison across NSGC will help foster a feeling of community and ensure that the personal and professional benefits of being a SIG member are available to all.

Sarah Stewart, MS, CGC is a Canadian genetic counsellor with experience working in clinical and academics in the United Kingdom and the United States. She is co-chair of the Pediatric and Clinical SIG and active in the International SIG.

Michelle Moore, MS, LCGC is an experienced genetic counselor at Sanford Imagenetics as a senior laboratory genetic counselor. She has experience in industry, genomic medicine, prenatal, cancer, pediatric, adult, and metabolic genetics in both the United States and the United Kingdom.

Laila Andoni, MS, CGC is a genetic counselor in the United States at Intermountain Healthcare. She has experience in cardiovascular and prenatal genetic counseling, along with laboratory stewardship. She is the past co-chair of the Cardiovascular Genetics SIG and is active on SIG discussion boards.

Arpita Neogi, MS, CGC is the lead genetic counselor in the cardiovascular genetics program at Yale University and past co-chair of the International SIG. Her clinical and research interests focus on cardiology.

Smita Rao, MBBS, MS is an entrepreneur and leads a genetic counseling consulting company that provides comprehensive cancer and cardiac genetic care to patients. Her career as a genetic counselor for the last 20 years spanned working in adult genetics in university settings o working as a lab/industry genetic counselor. She is the current co-chair of the NSGC International SIG.