Liana Abramson, MS, CGC; Rikki Gaber Caffrey, MS, CGC; Sara Cherny, MS, CGC; Lenika De Simone, MS, CGC; Sarah Jurgensmeyer, MS, CGC (she/her); Alyssa Valentine, MS, CGC
At 7:15 a.m. on November 8, six genetic counselors were on an Amtrak train from Chicago to Springfield, IL to meet with our state legislators. There were two missions for the day: discuss two recently introduced bills to prevent genetic information being used for life insurance discrimination, and emphasize our support for improved licensure processing for genetic counselors.
Fueled with caffeine, the energy on the train was high. In discussing how we felt about the upcoming day, we agreed that it felt serious and a little scary, but also exciting to get to this stage in our advocacy work.
We originally had several planned meetings for the day, but due to a floor vote scheduled at the last minute, all of our meetings were canceled. This ended up being a surprisingly beneficial turn of events. We went into the day with no expectations and relied on our skills as genetic counselors to be flexible and communicate clearly in the moment.
The first hours of our day were spent standing around, positioned strategically in the rotunda and hallways of the capitol building, an impressive and very hectic space full of lobbyists, legislators, and regular folks like us, hoping to get a word in. We were glad to see a meaningful number of legislators who were female-bodied and of multiple ancestral backgrounds, approaching a true representation of our state population.
As it turns out, strategic standing is very effective, especially if you’re partnering with lobbyists who are extremely well-connected and can introduce you to the legislators as they walk by. We had productive conversations with about 15 legislators and department chairs, every single one on our feet after our lobbyist flagged them down. It was notable to us that several of the legislators had personal experiences with genetic counseling and testing, and were kind enough to share their stories. There was energetic support for the bills which increased genetic privacy protections as well as the expedited licensing system bill, HB2394, which passed the very next day. Improving the process of licensing may seem like a small concern for legislators, but it showed us that they were invested in making the logistics of government more efficient and that our ability to practice effectively was important.
A highlight of our day was meeting Representative Nabeela Syed who introduced House Bill 4142, which would amend our Illinois Genetics Information Privacy Act to prevent life insurers from utilizing genetic information in their determinations. A second bill, Senate Bill 68, has been introduced by IL Senator Laura Fine, which would prevent life insurers and long-term care insurers from using genetic information. Both legislators informed us that constituent stories about discrimination motivated their bills. The fact that two bills were drafted contemporaneously demonstrates the urgency and importance of genetic privacy protections. Overall, we got the impression that legislators recognized the eventual ubiquity of genetic testing and that there is no basis for continued insurance discrimination.
Our government representatives have countless issues to consider. With so many issues competing for their attention, it was essential that we share our story in person. Traveling three hours to stand for eight hours in order to make a powerful two-minute connection with a legislator shows not just how committed we are to our message, but also that we value the work our legislators do in the room where it happens. Now, when patients ask us if their privacy will be protected if they apply for life insurance, we can truthfully say, we have a plan for that.
Liana Abramson, MS, CGC is a prenatal genetic counselor with the Advocate Illinois Masonic Antenatal Resource Center team in Chicago, IL. She previously served as a prenatal genetic counselor with the Center for Maternal and Fetal Health at NorthShore Evanston Hospital. There, she was also involved with the IDPH newborn screening program for cystic fibrosis, providing genetic counseling and relevant educational presentations. She enjoys supervising genetic counseling students through the Northwestern graduate program, is a member of the National Society of Genetic Counselors, and serves as Membership Committee co-chair for the Illinois Society of Genetic Professionals.
Rikki Gaber Caffrey, MS, CGC is the director of the Advocate Health Midwest Region Ethics Program and a genetic counselor. She oversees a team of clinical ethicists and works on social and organizational ethics challenges. She also created the Genomics Ethics Service Line, a specialized ethics committee focusing on the ethical analysis of genomics-related patient cases and policies. She is the past president of the Illinois Society of Genetic Professionals, and is currently a member of the Ethics Advisory Group with NSGC. She and her husband live in Wilmette, IL with their two daughters and two dogs.
Sara Cherny, MS, CGC is proud to be the first genetic counselor in the Section of Cardiology at Lurie Children's Hospital. Her role is a combination of patient care, program development, and research. She has been in practice for over 15 years, with experience in pediatric, prenatal, neurology, and cardiovascular settings. Her research addresses trends in genetic counseling, testing, and patient experiences over time, and she has been an invited speaker and multiple national and international conferences. Sara is invested in improving disparities in access to genetic counseling and testing services and is a longstanding member and past chair of the Advocacy Committee of the Illinois Society of Genetic Professionals.
Lenika De Simone, MS, CGC received her master’s degree in genetic counseling at Northwestern University in 2018. She serves as the neuromuscular genetic counselor at Ann & Robert H. Lurie Children’s Hospital of Chicago. Lenika is also a clinical instructor at the Northwestern University Feinberg School of Medicine. She has been a member of Illinois Society of Genetic Professionals and National Society of Genetic Counselors since 2017.
Sarah Jurgensmeyer, MS, CGC (she/her) is a pediatric genetic counselor at Ann and Robert H. Lurie Children’s Hospital of Chicago with clinical interests in Williams syndrome and aortopathies. She is also an instructor of pediatrics at the Northwestern University Feinberg School of Medicine and a faculty member for the graduate program in genetic counseling at Northwestern University. Sarah currently serves as the president of the Illinois Society of Genetic Professionals. She was the recipient of the 2023 ACMG Foundation Carolyn Mills Lovell Genetic Counselor Award and is passionate about the expansion of genetic services to more patient populations.
Alyssa Valentine, MS, CGC received her master's degree in genetic counseling from Northwestern University in 2021 and was certified by ABGC in the same year. Alyssa currently works as a cancer and cardiovascular genetic counselor at Cook County Health, Chicago’s largest safety net hospital system. Alyssa is also actively involved with the Northwestern Genetic Counseling Program. She is a member of the National Society of Genetic Counselors and the Illinois Society of Genetics Professionals. Alyssa served as the ISGP Advocacy Committee chair in 2023 and became president elect in 2024.