As mentioned in a previous article, I (Colleen) was once advised to “follow the fun”. This month we had a lot of fun hosting two calls with the presidents and chairs of the worldwide genetic counseling organizations. The goal of the calls was to listen and learn about genetic counselor organizations from around the world and meet the leaders of these organizations. More specifically, to learn about challenges these organizations and our profession faces in different countries, to strengthen our worldwide network, and to begin to identify where we can collaborate for the good of our patients and the profession. These calls directly tie to the NSGC strategic plan pillar of “Empowering our Communities”.

As genetic counselors based in the United States, there was so much for us to learn! The underlying current was the immediate feeling of camaraderie and community as each representative discussed the history of their organization, their challenges and triumphs. The twenty-four genetic counseling organizations that participated in the calls were founded between 1977 – 2023, with the African Genetic Counsellors Association about to launch in 2024, and range in size from six members to over 4,000 members. It was fascinating to get the perspectives of several countries where the genetic counseling profession is in its early stages of formation, as well as others where it is well-developed, but healthcare delivery looks very different than the American experience. No matter where genetic counselors may call home, the professional mission is the same as everyone navigates the different stages of how those goals are accomplished. 

Despite our differences, our organizations share similar challenges and actually have a lot in common. Some of the common themes were; 1) there are not enough genetic counselors per capita to meet the needs of patients; 2) a need for government recognition which includes both title protection and reimbursement of genetic counselor services; 3) education and awareness about genetic counselors and genetic counseling for the general public is a worldwide need; and 4) continuing education for genetic counselors, and training for genetic counseling students is a need we all share.  

One of the learnings was how the term ‘genetic counselor’ is a very layered term all over the world, which reflects elements of our national conversations over the years. In some countries, the term refers exclusively to physicians; in some areas, it refers to advanced practice providers; in other areas, who provides service and how it is delivered struggles to be defined. Regardless, the passion and determination of these leaders to advocate for genetic counseling services and fulfilling the genomic healthcare needs of all populations was inspiring.

We are grateful to all who participated - many participants woke up early or stayed up late to join the calls. It was wonderful to meet genetic counselor leaders from around the world and learn about their organizations. We heard unanimous desire to continue the conversations, identify additional ways we can continue to connect, learn, help each other, and collaborate to advance our profession. 

Several participants indicated they will be attending the NSGC Annual Conference, and we look forward to meeting them in-person and welcoming them to our conference. 

We would like to end by thanking everyone who has reached out to share their moments of gratitude, it has been awesome to hear from so many people. We encourage you to continue to share the gratitude with your colleagues, friends, and families.

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