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Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA!
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Hi, redditors! We’re genetic counseling experts with the National Society of Genetic Counselors. Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. October is Breast Cancer Awareness Month, but many of us do what we can to raise awareness all year long. As a part of our job, we help people understand: hereditary risk for breast cancer; how those with a higher risk of cancer can understand their testing and treatment options; the role of genetic counselors in healthcare; and how to educate family members about their potential risk of disease. Here’s a bit about those of us answering your questions today, one of whom has a personal experience with genetic testing: Caroline Lieber, MS, CGC: I served as Director of the Joan H Marks Graduate Program in Human Genetics at Sarah Lawrence College for 15 years. After 35 years as both an academic clinician and an educator, I wanted to see what genomics was all about from the consumer perspective. The BRCA gene screening test seemed like a no-brainer. I’m not from a high-risk population, and there’s no strong history of cancer in my family. I offered up my saliva without giving it much thought. When I got an email a week later asking me to make a genetic counseling appointment, I thought it was a normal part of the process. I made an appointment with a genetic counselor I know personally. After she called me back – a call that must have been terribly difficult for her – nothing seemed normal for a long time. I learned I had an altered BRCA1 gene. Read more about my experience and the emotions is brought up here. As a genetic counselor I always felt I understood the emotional impact genetic test results have on patients. Now that I’ve experienced it firsthand, I see even more clearly the importance of talking to a genetic counselor about these issues, especially before testing. Ask me anything about my genetic testing experience, cancer genetics and the ever evolving nature of genomic findings. For example, since I received my genetic test results, there has been updated research on my particular alteration. Joy Larsen Haidle, MS, CGC: I am the immediate past president of the National Society of Genetic Counselors and one of NSGC’s Cancer Experts. I can discuss hereditary cancer syndromes such as Lynch syndrome and hereditary breast and/or ovarian cancer, as well as my experience as a public policy advocate for genetic testing. In my job, I help patients who have a higher chance of genetic diseases understand genetic testing results, navigate through treatment options, and educate family members about their potential risk of disease. Sometimes this means giving them the hard news that they have an increased risk for cancer. When this happens, as a genetic counselor, I am there to help them understand how their genetic test results might influence their surveillance and treatment options, as well how the result impacts their family members. Sometimes, it also means just listening to their fears and addressing their concerns. Ask me anything about my job as a genetic counselor. We’ll be back at 12:30 p.m. EST to answer your questions, ask us anything! Want to know more about how genetics affects your risk for diseases, or how to capture your family health history? Sign up for our free webinar on Nov. 2