Lindsey Byrne MS, CGC ; Samantha Greenberg, M.S., M.P.H., CGC
As genetic counselors, the indications we see in clinic, what we test for, and how we facilitate testing is constantly changing. This evolution gives us the unique opportunity to create connections and collaborations and address newfound gaps in knowledge and implementation. One example of this lies within the genitourinary (GU) cancer space. Given updated guidelines from the National Comprehensive Cancer Network (NCCN) relating to the genetics of GU cancer, the idea of a peer-led cancer genetics workgroup emerged. Despite formal webinars and journal clubs, there was a lack of collaborative discussion on how to implement genetic counseling in the GU cancer space. Though the Cancer Special Interest Group (SIG) listserv is a core resource for questions and cases, there was proposed utility in having a smaller group of individuals with a shared common interest.
In mid-2021, we sent an email to the NSGC Cancer SIG listserv, surveying interest in developing a small group focused on GU cancers. Interested participants completed a Google form listing their email and practicing location, among other questions. Twenty-seven genetic counselors completed the form. Most respondents (n=18) replied that less than 25% of their job is dedicated to GU cancer patients, and prostate cancer was the most common cancer reported receiving genetic counseling amongst GU cancers.Respondents were interested in the workgroup as a place to share difficult cases, discuss clinical or GU-related questions, and create a collaborative space. We used our first meeting to establish ground rules and goals for the workgroup, resulting in virtual hour-long meetings held monthly.
These monthly meetings are informal, serving as a space to bring complicated cases and openly discuss GU cancer topics. When a member presents a challenging case, others share their background and insight. This team-based approach provides additional feedback to a member experiencing this type of complex case for the first time. Though one person sets up the monthly meeting, sends out reminder emails, and acts as meeting facilitator, other members can bring questions or concerns and the group decides if changes are needed. Annual evaluation of the group structure occurs, and each person plays a role in contributing to the group culture and future endeavors.
Our peer-based collaboration has highlighted that there is an additional need to work together when new indications arise for genetic counseling. We found that creating a safe space for everyone to explore opportunities for incorporating a new indication into their practice has resulted in a 25% growth of the listserv and an increase in monthly attendance in the workgroup. Additionally, we have collaborated on multiple research projects and recently received grant funding for a renal cancer genetics project. Thus, there appears to be a benefit from the development of small indication-specific educational groups that extend beyond case presentations and education. If you’re a genetic counselor in a new specialty or have recently had a new indication added to your referral list, consider reaching out to others to form a recurring opportunity for education, support, and brainstorming. For us, the maintenance and continuation of the peer-based GU cancer genetic workgroup has served as an inclusive environment for those interested in the field to learn more, support each other, and pursue new research avenues.
Lindsey Byrne MS, CGC received her Master of Science in Human Genetics from Sarah Lawrence College in 2008 and has spent her entire in the field of cancer genetics. She is currently at The Ohio State University as an Assistant Professor where she created and leads the GU cancer genetics clinic and works on the BAP1 gene research study. She has enjoyed all her new connections through the GU working group, including debates about Crumbl and Reese’s flavors with Samantha.
Samantha Greenberg, M.S., M.P.H., CGC currently directs the UT Southwestern Genetic Counseling Program and is a graduate of the University of Michigan Genetic Counseling Program and University of Michigan School of Public Health. She’s grateful that Twitter introduced her to Lindsey, and that their UMich-OSU rivalry doesn’t supersede their killer collaborations.