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Old 11-12-2015, 05:05 AM
Neuroproblem Neuroproblem is offline
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Join Date: Feb 2015
Posts: 355
8 yr Member
Neuroproblem Neuroproblem is offline
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Join Date: Feb 2015
Posts: 355
8 yr Member
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Quote:
Originally Posted by ElaineD View Post
Have you banked your DNA? Have you thought about it? Have you even heard of it?

I heard of it for the first time yesterday in my appointment with a genetics doctor. The appointment came as a surprise since it was made for me by one of my doctors, who didn’t tell me he was referring me to a genetics doctor. But that’s another story. I had one tiny letter exchange in one item of DNA in the test for Charcot Marie Tooth. I agree with the geneticist that there is no point in further testing, since nothing can be done with whatever is found. And most likely this is just another 'incidentaloma" My term for something that shows up on a test that is essentially meaningless or turns out not to be there on further testing. I've had gobs of these over the years since I've had every test under the sun several times over.

Dr. Marie McDonald, pediatric geneticist at Duke University Medical Center Hospital, suggested that I bank my DNA (the procedure costs around $100 I think). This would give my children and grandchildren the opportunity to examine my DNA for possible genetic clues to conditions that might develop after my death.

An alternative would be complete sequencing of my entire DNA done now, as a record for the future, and to answer, if possible, whether or not there are genetic clues to my wide range of Zebra conditions. That complete sequencing is called Whole Exome Sequencing, and costs about $7000.

I will probably participate in DNA Banking, but not Whole Exome Sequencing.

Any thoughts? Any experience?

Hugs, ElaineD
incidentalomas are tumors that are found accidentally on mri or ct for other reasons. The problem some people might have with DNA banking is that, they are concerned it can be sold to other groups for thier own purposes, and there is ethical concerns withit.
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DejaVu (11-14-2015)