Quite frankly, Twyla Brase is full of baloney. She is not worth wasting the key strokes to respond to, but I will. She is spreading lies that threatens the core of newborn screening by preying on people's fears of "big brother" using children's genetic information for illicit experiments and things like cloning. She opposes newborn screening and says that parents need to be fully informed about taking the blood spot and must affirmatively consent to testing. She says everyone should understand that the Government has the child's genetic information and who knows that they will do with it? However, all medical records kept by Medicaid, Medicare or government employee's health information can be accessed by the Government. How is this any different? Do we refuse healthcare because the Government will keep the health records? What about all of the blood that is taken by labs for blood tests? What will they do with the blood when the test is done? They could clone you if they wanted to. Blood spots are kept for a period of time to confirm the testing and to protect themselves against against lawsuits in case of a false negative. Most states destroy the samples after a period of time, varying from state to state.
We can make ourselves crazy coming up with all of these scenarios of ill will and sinister genetic engineering. Frankly, we probably all watch too much TV and have active imaginations. The fact is that the blood spot from newborn screening is used to save babies lives by testing the drop of blood for life-threatening conditions. The blood spot deteriorates over time and becomes unusable. If they are kept for more than a year or two, it is purely for record keeping.
Would you have refused the test if someone came up to you and told you that no one knows what the Government would do with the blood spot and could use it for cloning? Sure, if put that way you might have refused and your child might have gone into a serious adrenal crisis at a few days old and risked death. But once you took the child to the state University Hospital for care, his blood would again be in control of the state government. Frankly, we can't get away from it and we just have to trust that people are basically good and that they will not use our medical information for some crazy purpose. They are there to help us live healthy lives, not clone us.
Sorry for the tirade but this Twyla Brase's crazy lies get to me because, as shown by the responses here, it touches on deep seated fears that live in most everyone. If she succeeds in scaring enough people, babies will die and people will not receive needed health care.
Kelly
