Intersex Affirming Genetic Care

Kayla Horowitz is a certified genetic counsellor at the Cliniques Universitaires Saint-Luc in Brussels, Belgium, where she holds specialized clinics in cancer genetics, reproductive genetics, neurogenetics, and variations of sex characteristics (VSC). A 2022 graduate of the McGill University Masters of Genetic Counselling program, she has published works amplifying the voices of individuals with VSC and their families, aiming to drive meaningful change in clinical practice. Her work bridges intersex community advocacy and medical collaboration, focusing on deconstructing binary views of sex and gender and promoting safe, inclusive healthcare environments.

Marissa Adams has been involved in intersex and variations of sex characteristics (I/VSC) peer support and advocacy movements for over 10 years working for the largest and oldest peer support group for intersex individuals and their families. Marissa is also an assistant to Dr. Tucker Pyle, Director and Principal Investigator of the GenitOurinary Rare Anatomic Differences (GoRAD) lab which specializes in gonadal germ cell health and genitourinary differences. Marissa is actively involved in research focused on healthcare experiences of people with I/VSC and their families, psychology, eating disorders and medical ethics.

Darius Haghighat is a reproductive genetic counselor at Boston Medical Center and an Assistant Professor of Obstetrics and Gynecology at Boston University Chobanian & Avedisian School of Medicine. He serves patients who are pregnant, planning a pregnancy, or coping with pregnancy loss; he is especially proud to do so in a safety net setting. As a queer genetic counselor, he is passionate about interrogating binary assumptions of sex and gender in healthcare and advocating for LGBTQIA+ health equity. For his graduate capstone research project, he interviewed intersex adults to learn about their experiences with healthcare providers and their recommendations for affirming practices. He has had the privilege of joining other research projects centering the voices of intersex and trans individuals, as well as those with sex chromosome differences.

In this discussion, the panel of international genetic counselors, researchers, and advocates address:

• The role of genetic professionals in intersex healthcare

• Considerations for safe and affirming genetic care for intersex individuals

• Educational gaps in genetic counseling and how to address them

• The role of genetic professionals in intersex advocacy and education