How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Friday, May 7, 2010
Update To Yesterday's Post
I called LabCorp and spoke with the Cytogeneticist about my concerns. I am glad I did because I feel much better about this whole thing. He said that the test itself, not the information obtained from the test, is still somewhat in the experimental stages so it has to be listed as "for research purposes." The data itself is not what is used for research. Until there is more peer reviewed literature and studies about this particular test it must say that on the test results to make what they are doing legal. Secondly, I told him how I was bothered by the fact that it stated they would be archiving my child's DNA (if I was reading it correctly.) He said they destroy the DNA itself. What they archive is the DNA sequence in numbers and letters as "data" not the actual DNA itself. It is still somewhat bothersome that they have Anna's "code" but much less bothersome than thinking they have her actual DNA stored. He said they do not just perform further testing randomly but that as new genes are discovered the doctor can order more tests to see if those certain genes are defective. Since they already have her "code" they can just see if that flaw is there in about 10 minutes rather than 3-4 weeks like it takes now. We will not be having any further testing done but she is archived anyway. The guy actually thanked me for calling and said that sometimes they have a hard time wording things so that the general public will understand what they mean and that after his conversation with me he thinks maybe they should go back to the drawing board about the wording printed on the labs. We discussed how it could be worded so that it made sense that the data, not the actual DNA, was stored and that the results are not for research purposes. I thanked him for his time and that was that. I am so glad I called and didn't sit around worrying about it.
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