By Katrina Gossett — 03/17/2014
The first panel session I went to today was about a topic I have not explored much: genetic testing. I was diagnosed when I was 13 months old and I haven't really thought much about testing since. (I didn't really think about it much then either since I was a baby, but I digress.)
Even though I haven't thought about the importance and implications of genetic testing, it may one day be very important to me and to those in my family, as we think about having children of our own. So I decided to listen in.
Genetic testing is at a crossroads. The professionals on the panel talked about the decreased cost of genetic testing and the increasing value, especially for research. As clinical trials are popping up, knowing an exact diagnosis will be very important. It is also important for many just to have peace of mind and closure. The panelists discussed the huge benefit of this knowledge, increasing exponentially every day as research continues.
They also discussed the drawbacks and potential consequences that every patient must consider in having genetic tests. Some relatives of current patients with neuromuscular diseases may want testing even though they don't have many symptoms. This could, however, impact their ability to get life insurance or disability insurance, so they need to make educated decisions. Additionally, doctors need to consider whether insurance will cover the tests and if there are ways to make sure they get covered. In all cases, all the panelists agreed that the patients need to be the ones making educated decisions about what testing they want with guidance from doctors and genetic counselors.
Overall, I found this panel very thought-provoking. The questions I will face about genes aren’t limited to skinny vs. boot cut, and these panelists gave me some interesting issues to consider.
Muscular Dystrophy Association — USA
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
The Muscular Dystrophy Association (MDA) is a qualified 501(c)(3) tax-exempt organization.
©2014, Muscular Dystrophy Association Inc. All rights reserved.