The article below reflects the personal opinions of the author(s) and does not reflect the views or opinions of the Perspectives editors or committee, or the National Society of Genetic Counselors (NSGC).
While genetic counseling started in the United States (U.S.), there are now over 10,000 genetic counselors (GCs) in at least 45 countries. Have you wondered about the status of genetic counseling globally? Do you dream about working in another country? Are you living in the U.S. on a work or student visa and wondering if it’s possible to work in your home country? Or maybe you’re just curious about expanding the profession around the world. In any case, here are two groups to learn more about.
The International Special Interest Group (ISIG) first began as a subcommittee within NSGC in 2004. The original members were primarily GCs trained in the U.S. but working outside of the country, facing challenges around professional recognition, navigating other healthcare systems and establishing a career and life outside the U.S. The original goals of the international subcommittee included educational content, a database of international GCs and genetic services, a listserv / discussion forum and international fellowships and exchanges. As the subcommittee gained momentum, it applied for NSGC SIG status, which was granted in 2008. The first chair and vice chair were Shobana Kubendran and Angela G. Arnold, respectively. Beyond the subcommittee’s original goals, the ISIG also prioritized creation of informational resources on moving, working, training and certifying as a GC in other countries and developing a relationship with the Transnational Alliance for Genetic Counseling (TAGC).
Today, the ISIG has over 150 members. Membership consists primarily of three groups: 1) U.S.-trained GCs working outside of the country, 2) individuals in the U.S. on a work/student visa, and 3) individuals with an interest in international genetic counseling. Each of these subgroups has unique needs and priorities but shares a commitment to supporting global genetics services.
The ISIG’s continuing work expands upon the vision of our founding members. We aim to be a partner in the global growth of our profession, and an advocate for international genetics providers. We have funded international training, clinical rotations and research, created tailored resources, mentored prospective applicants, hosted numerous educational webinars and delivered a plenary at the NSGC annual conference (2022).
As an international group, the ISIG faces unique challenges. Working across timezones is difficult! Prospective members from around the world may face financial barriers to joining NSGC/ISIG. Global regulations and practices are constantly evolving, so resources need frequent revision.
While our projects are important, we often hear that the ISIG’s most valuable resource is the community. Through our social hours, discussion forum and volunteering together, we draw on the support and experiences of one another.
The Transnational Alliance of Genetic Counseling (TAGC) was started in 2006 by Janice Edwards to bring together GC educators around the globe. Initially, the main focus was networking through the development of an open listserv and occasional global conferences (last in 2016). TAGC was also meant to help developing GC programs in countries where the profession was newer to find connection, support and resources. TAGC currently has a Board of Directors that includes one representative from each country with GC training. While TAGC’s central mission is education related, by virtue of the fact that there is not (yet) a global GC organization, many broader professional topics have been discussed by the group over the years, including issues of credentialing and development of the profession.
Over the past few years, we have worked to re-energize TAGC with new initiatives. Plans and projects include:
- An in-person meeting in conjunction with the 2025 World Congress of GC (Feb 2025, UK)
- Regular meetings in conjunction with other global GC conferences
- Developing videos of mock GC sessions in a range of common languages
- Creating workgroups to discuss topics such as clinical training globally, research requirements in GC programs and professional issues such as credentialing and regulation of GCs where the profession is emerging.
- Spearheading a research paper that will update the “Global State of GC” (Ormond et al.).
- Collaborating with HUGO’s Education subcommittee to complete a Delphi study to identify a consensus list of core curriculum topics when establishing a GC program in an area where GCs are not yet present or are emerging. Countries that have recently obtained government approval for GCs as a profession (e.g., India and Malaysia) are anxious to get feedback on what curricula and skills they should require as a result.
At our December 2023 call, members of the TAGC Board generated some early ideas on ways that NSGC members and others could get involved in supporting the global genetic counseling conversation. These suggestions included:
- Society level — Help establishing national societies and country-based credentialing
- Research — Propose student project ideas, mentor student projects publication and mentor/partner with GCs conducting projects in countries where there is little research training.
- GC Training — Mentor new program directors. "Train the trainer" to help GCs and medical doctors develop clinical supervision skills.
- Clinical training/practice — Telehealth training for international GC students with U.S.-based GCs
If you are an international GC, an aspiring international GC or simply interested in broadening your global perspective, we invite you to connect with our groups.
Please reach out to our email for ISIG through NSGC or to Kelly Ormand of TAGC.
Acknowledgements: Thank you to Angela G. Arnold for providing her insights, recollections and documentation regarding the origins of the ISIG.
Reference
Ormond KE, Abad PJ, MacLeod R, Nishigaki M, Wessels TM, The Global Status of Genetic Counseling in 2023: What’s changed in the past 5 years?, Genetics in Medicine Open (2024), doi: https://doi.org/10.1016/j.gimo.2024.101887.
Grace Kavanaugh, MS, CGC Grace is an ABGC-certified genetic counselor at Kaiser Permanente in California. She previously worked as a research genetic counselor at the Institute of Cancer Research in London, England. Grace is the 2023-2024 co-chair of NSGC's International Special Interest Group.
Monisha Sebastin is a genetics professional with expertise in clinical care, leadership and research. She received her Bachelor of Technology degree in genetic engineering in 2014 from SRM University, India, and her Master of Science degree in human genetics/genetic counseling in 2018 from Sarah Lawrence College (SLC) in Bronxville, NY. She is the senior genetic counselor at the Children’s Hospital at Montefiore (CHAM) where she specializes in rare diseases, cardiovascular genetics, immuno-genetics and research. She is a member of the NYCKidSeq and NYCRD research study team and serves as a thesis and clinical rotation supervisor of genetic counseling students. She is the 2024 president of the New York State Genetics Task Force (NYSGTF) and co-chairs the International SIG at NSGC. Her past leadership roles include serving as chair of the Education subcommittee at NYSGTF, co-chair of the Pediatric and Clinical SIG at NSGC and co-chair of the USIGC at International SIG. She was awarded the 2022 Heart of Genetic Counseling award. She serves as an advocate for and strives to be a resource to fellow international genetic counselors and aspiring students.
Kelly Ormond is a genetic counselor (U.S. ABGC certified and EBMG registered) and the current president of the Transnational Alliance for Genetic Counseling (TAGC). She joined the Health Ethics and Policy Lab in Zürich, Switzerland as a senior research scientist in February 2021 and is an adjunct professor in the Department of Genetics at Stanford School of Medicine, Stanford University, California, USA.