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!
Abstract
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