Eye on DNA Podcast Interview: Huntington’s Disease

Eye on DNA Podcast Interview: Huntington’s Disease

by Dr. Hsien-Hsien Lei
Posted October 16, 2007 in DNA Podcasts and Videos, Personalities with DNA

Today I had the pleasure of talking to Kathy Flake of What Do I Know? about her family history of Huntington’s disease (HD) and her personal experience with genetic testing. After talking to her, there is no doubt that Kathy certainly knows a lot!

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Click play to listen to the interview which is about 25 minutes.

Notes:

00:30 Why genetic testing for HD is different than genetic testing for other complex diseases like breast cancer.

1:10 Kathy’s own experience with genetic testing for HD

5:15 Kathy’s receives the results of her genetic test for HD

6:48 Kathy talks about her aunt, her mother’s baby sister, who was diagnosed with HD in September 2007

9:11 We talk about preimplantation genetic diagnosis (PGD)

12:32 We talk about Katherine Moser who tested positive for the HD genetic mutation and was featured in the New York Times. (Kathy Flake’s post on Katherine Moser.)

14:15 How HD affected Kathy’s lifestyle choice to become a vegetarian then vegan.

16:19 Would Kathy consider undergoing other genetic tests?

18:03 Kathy gives some advice for people preparing for a major genetic test.

19:50 We chat about access to genetic testing and the confusion over what to do with genetic information.

Please let me know what you think of this first Eye on DNA Podcast Interview!

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(6 comments)


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6 Comments

Comment by Maureen Subscribed to comments via email

Thank you for that very thought-provoking podcast. I can understand why Kathy wanted to know if she had Huntington’s Disease or not and I can only imagine her immense relief to find out she tested negative for it.

My concern with genetic testing is if insurance companies find out the results. The repercussions could mean that people would be unable to get health insurance or be charged exhorbitant fees.

I also wonder if there is a case for not knowing because it would be so traumatic to find out you are definitely going to develop a disease. It could be argued that ignorance is bliss.

Ultimately, I think it should be a personal choice.

Hi Maureen! Great to hear from you. There are laws in the US and UK that aim to protect people from genetic discrimination. I expect that these laws will come into effect no later than 2-3 years from now.

As for ignorance is bliss, I can definitely identify with that. It’s a personal choice that needs to be supported by a lot of knowledge and guidance. Unfortunately there aren’t enough genetic counselors to go around! Hopefully that will change soon.

 
 
Comment by Maureen Subscribed to comments via email

It’s good to know about the laws. I hope they do go into effect soon because I’m sure insurance companies would be very eager to get this data and use if for their benefit.

I can see that there will be an increasing demand for more genetic counselors. I hadn’t even thought about that aspect. Thanks for pointing it out.

 

[...] Medicine Blog hosts Grand Rounds Vol 4, No 5. My podcast interview with Kathy Flake about genetic testing for Huntington’s disease was one of only 15 that were included which “best reflected the variety of ways prognosis [...]

 

[...] genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP) (See Eye on DNA interview of Kathy Flake whose mother had [...]

 

[...] accept the results of a genetic test that does not confirm your pre-existing beliefs. For example, a person with a family history of Huntington’s disease may be shocked to find that they do not carry the HD gene [...]

 

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