If you are a parent or health professional you may be familiar with the practice of taking a newborn babies blood at birth to test for certain genetic disorders. As a mother, I remember being told that my childs blood would be drawn and it was necessary for her health. I don't remember being given a choice, and I didn't have the fore-thought to ask how long they could keep my childs blood or if it could be used for other purposes.
In Washington state, parental consent is NOT REQUIRED, for newborn screening. "They" keep the blood/DNA for 21 years. Blood taken is tested for 24 conditions.
Cases are coming to light of blood samples being used for further testing and research. Some people and govenment organizationans are calling for a government-wide DNA data bank.
I have a couple of problems with this. First, in WA state in 2008 out of 63,131 births, 98 came back positive with a genetic disorder. Im terrible at math, but that's a seriously low percentage. I bet the rate of infection caused by the needle stick was about the same percentage!!!! The tests are $60.90, thats $3, 844, 677. 90!!!!! For 98 positive results! The conditions being screened for occur in 1 in 1600 to 1 in 60,000 people (depending on the disorder being screened for). Am I really the only one who thinks this odd?
There are NO statistics that show this screening is any more effective at early diagnosis than asking family if disorders run in the family.
Second, how can we be sure the DNA won't be used for other purposes?Why, after the test comes back negative, don't they discard the sample? Unless of course, they have other plans. Plans they don't need your consent for.
Another question to ponder- why not test for even more. While they are at it maybe they should see if my child is predisposed to heart disease or Ahlzheimers? I bet there are hundreds, possibly thousands, of ultra rare genetic diseases in which they could add to the list. Why not screen for everything? Where do we draw the line- and more importantly than that- who decides where the line is drawn?
What guarantees in the future- that health insurance companies wont be allowed to deny health care to people showing pre-disposition of diseases?
I will be seeking to have my child's sample destroyed. Please stay in touch to see how that works out.