Saturday, March 3, 2012

What is Genetic Counseling and should my family be tested?

genetic counselingThe MDA recently sponsored an online presentation on genetic counseling. Afterward a YouTube video was made available of the presentation as well as a Quest online magazine article. Both are well presented in layman’s terms. I highly recommend viewing the presentation or reading the article since it is so applicable to Kennedy’s Disease (and Kennedy’s Disease is even mentioned).

“Article Highlights:
  • MDA’s Genetic Counseling Webinar, which occurred Feb. 22, 2012, covered the basics of genetics and genetic testing, and answered questions from participants.
  • Knowing your exact genetic diagnosis has advantages in terms of family planning and testing of other family members who may be presymptomatic, or may be carriers of the genetic mutation.
  • An exact diagnosis also improves disease management by alerting doctors to associated health problems, such as cardiac issues.”
“Knowing your exact genetic diagnosis does more than just satisfy your curiosity — it can impact family planning, disease management and participation in clinical trials.”

There is even a Frequently Asked Questions section that addresses:
  • What happens at a genetic counseling session?
  • What are the limitations to genetic testing?
  • What does it cost?
  • When should unaffected family members be tested?
  • How can I find a genetic counselor who is familiar with my disease?
Link to Quest Article:
Link to YouTube presentation:

Genetic Counseling ListBack in the early 80s my entire family was tested. At that time there was no test for Kennedy’s Disease and when the results came back three of us were shown to have Familial ALS. There was no genetic counseling offered at the time so we were left with a large void as to what does all this mean. About fourteen years later I was given another DNA test and officially diagnosed with Kennedy’s Disease.

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