#27- Protecting genetic information: Life insurance and GINA

In this episode we are exploring 2 recent Journal of Genetic Counseling articles on the topic of insurance coverage and concerns about genetic discrimination.

Segment 1: Cardiovascular genetic counselor decision making about discussing life insurance with patients

Guest Bios:

Sara Cherny has almost 20 years of experience as a genetic counselor in the Chicagoland area, specializing in cardiovascular genetics for the past decade. Her wide range of experience allows her to provide comprehensive care for patients in the Cardiovascular Genetics Clinic at Ann & Robert H. Lurie Children’s Hospital, where she engages in patient care, program development, and research. Her research focuses on trends in cardiovascular genetics, access to genetic services, genetic privacy, and genetic discrimination. She is involved in advocacy work with the Illinois Society of Genetic Professionals (ISGP) and the Pediatric and Congenital Electrophysiology Society (PACES). Sara loves how her work combines science and patient care, and is committed to scientific discovery that both improves patient experience and moves the field forward.

Sarah Jurgensmeyer Langas is a genetic counselor in the Heart Center at the Ann and Robert H. Lurie Children’s Hospital of Chicago with a specific focus in congenital heart disease, aortopathies, and Williams syndrome. Sarah is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and enjoys teaching and providing clinical supervision to genetic counseling graduate students and medical students. Sarah is also active in the Illinois Society of Genetic Professionals, currently serving on the Advocacy Committee and previously serving as President in 2024. She was the recipient of the 2023 ACMG Foundation Carolyn Mills Lovell Genetic Counselor Award and is passionate about expansion of genetic services to more patient populations.

https://www.instagram.com/luriechildrensheartcenter/

https://www.instagram.com/sara_cherny/

In this segment we discuss:

- How life insurance considerations arise in genetic counseling, particularly in cardiovascular genetics, and how conversations vary based on patient knowledge, phenotype, and age.

- Findings that genetic counselors are more likely to address life insurance with phenotype-positive and adult patients, while time constraints and clinical context can limit these discussions.

- How fear of genetic discrimination impacts patient decision-making, including declining testing, alongside reports of real-world insurance denial.

- Challenges in balancing transparency with avoiding unnecessary fear, and the need for better education, standardized guidance, and further research in this space.