Thursday, May 6, 2010

I Feel Violated

arr(1-22,X)X2 Yeah, what is that? It is the result of Anna's latest round of genetic testing which again reveals a genetically and chromosomally NORMAL child. She had the Chromosome Microarray done after our last visit with the geneticist. We WILL NOT be going back. That test was another $3000 and it again told us that our child does not have a genetic problem. I do not understand why we keep being referred back to genetics but I am refusing to go back. More than anything we are not going back because something that is stated on the lab results kind of freaks me out. It says,"Archival data review will be performed as newly defined dosage sensitive genes are identified...Results of this test are for research purposes only...The result should not be used as a diagnostic procedure without confirmation of the diagnosis by another medically established diagnostic product or procedure..." I was not told at the time of the lab draw that this test is for research purposes. I did not EVER consent to that. It is not that I have a problem with research. I know research is what moves us forward. However, I feel that whether or not we choose to participate in research is OUR choice. We were not given that choice. We were told to have the lab done and I assumed (stupid, I know) that it was for OUR information and to further develop a treatment plan. Instead, the treatment plan is the same but they are now storing Anna's DNA for later testing. Is it just me or is this whole thing kind of creepy? I plan on calling LabCorp to see if they will destroy what they have of ours because I am not interested in any further testing. I do not care if the further testing is free or not, this was never about the money, it is about a person's right to whether or not they want to participate in research and whether or not they have consented to storage of their DNA. I think there comes a point where the parent has accepted what happened and the doctor can't accept it. I think we have hit that point. Babies born with IUGR are at an increased risk for developmental delays and cerebral palsy due to reduced placental blood flow. That is a fact. I wish it would not have happened but it did. We cannot go back and we cannot change it. I prefer to take what is and move forward with it. I wish others could do the same!


  1. Yeah, that would give me a yucky feeling too. And all that testing just for research? Yuck.

  2. I am so sorry Jamie. I would have assumed the same thing. But I guess why would they tell you: "Hey we want You to pay to have testing done that will only benifit US. We want this info, not for the medical treatment of your child now but for our research."? JERKS!