The Cancer Special Interest Group (SIG) Anti Racism Subcommittee was established in 2020 by founding co-chairs Fatima Amir and Shreshtha Garg, with the goal of facilitating anti-racist practices among cancer genetic counselors. The subcommittee is open to all genetic counselors who are invested in advancing antiracism among the cancer genetics community and the clients we serve. To support the varied spheres of need, the subcommittee is composed of five working groups — Policy, Research, Industry, Clinic and Education — referred to as the PRICE groups. Each group has taken on a variety of projects in service of anti-racism, and the results have had wide-ranging impacts.

Our Research Group collaborated with the NSGC Genetic Counseling Literature Repository to update the database with newly published articles centered on Justice, Equity, Diversity and Inclusion (J.E.D.I.) topics, retroactively tag existing articles and to develop a search string to capture future articles. This group has also been in communication with graduate program leadership to provide resources that support and encourage student engagement in antiracist research processes. Finally, this group also has a variety of research project ideas available for any current genetic counseling students interested in a project with a focus on anti-racism.

Members of the Clinic Group have been actively involved in advocating for the ethical and equitable use of polygenic risk scores (PRS). They met with clinical laboratories to discuss the use of PRS, and to express their concerns about the exacerbation of healthcare disparities, given the development of PRS using data derived from homogenous populations. In June 2023, the Clinic Group authored an article in DNA Exchange (“Polygenic Scores: A Demand to Laboratories for Greater Transparency, Validation and Inclusivity”), which called attention to the inequities associated with PRS, as well as for transparency and action toward validating PRS across ancestral groups before utilization in clinical care. This messaging was also highlighted in a petition created by the Clinic Group and circulated via Change.org. While there have been some changes to laboratory practices and the way PRS are being utilized, there is still more work to be done to address equity concerns related to PRS. 

The Education Group developed an Anti-racism Curriculum Toolkit to be used as an inclusive teaching reference guide for cancer genetics course instructors to incorporate antiracist pedagogy into their curriculums. The toolkit includes teaching tips for course instructors and guest speakers, reference material and additional readings and a glossary of terms. In February 2024, the Education Group published an article in the Journal of Genetic Counseling describing the successful development of the toolkit.¹

Given that anti-racism extends beyond cancer genetics, we have been in communication with other SIG and subcommittee leaders to identify others working on J.E.D.I. initiatives, with the goal of consolidating resources and collaborating on common goals. We invite others to join us in this important work and welcome new members to the Anti Racism Subcommittee at any time. Members of the subcommittee have the opportunity to join projects within any of the PRICE groups based on their interests and bandwidth. Anyone interested in joining the subcommittee should reach out to current co-chairs: Katie Lang and Caitlin Reid.

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Reference

1. Paysour, J., Shehayeb, S., McVayre, K., Garg, S., Amir, F., Vercruyssen, A., Sitaula, A., Gerhart, M., & Greenberg, S. E. (2024). From intention to action: Assessing need and creating a JEDI toolkit for individuals teaching cancer genetics curriculum. Journal of Genetic Counseling, 33, 156–163. https://doi.org/10.1002/jgc4.1851

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