Zatera Ul

Newborn screening: they take a few drops of your newborn’s blood, and test it for about gazillion diseases.

The problem in Minnesota is that they keep the cards with the blood spots on them “for an indefinite period of time” which probably means FOREVER. That means they have your baby’s DNA, and can do basically anything they want with it. Use it for research, sell it for research, make a big database of everyone’s genetic deficiencies, whatever. And without your consent. They claim that they anonymize the blood samples for research uses, but DNA isn’t all that anonymous, is it?

It’s possible to opt out of having them keep the card and test results, but all that means is that they promise to destroy the card and results within TWO YEARS. The only reason that I even knew about the opt-out was from reading Vox Day and his paranoid libertarian commenters. The Health Department brochure on newborn screening barely mentioned it. You can bet that most parents don’t know about it.

Thanks to Vox, we did, and we chose to fill out the opt-out (dissent) form. The girl at the hospital lab didn’t even know what we were talking about when we asked for it, and had to find an older guy to dig it up. I remember that the form had stupid things on it like, “If you choose to have your child’s blood sample stored by the state, it will not be available if you ever need it to identify your child in the future.” As if we wouldn’t be able to find any DNA samples just lying around the house, or be able to compare against family members’ DNA. The 2005 form that we filled out actually had a lot of the informed consent stuff on it that should have been in the brochure. The current form is much shorter.

This Citizen’s Council on Health Care document has a good summary of all the issues involved, though slightly outdated since it is from 2007. A MUST-READ IF YOU ARE HAVING BABIES IN MINNESOTA. Clearly the medical ethics are murky here. In my old job, we couldn’t even sit research subjects down in front of a computer without a lengthy IRB process to make sure that we were going to get informed consent from every subject, and not do them any harm. Here that process is almost entirely absent.

Also, according to the CCHC document, the Health Department is supposed to notify you when they get around to destroying your baby’s blood sample. We haven’t gotten anything from them, and it’s been more than two years.

The basic text content of the Health Department brochure is available here. It actually doesn’t say anything about samples or results being used for research purposes, though this is mentioned on some of their other web pages. (I have an ongoing gripe about overly simplistic patient education materials written at a fourth-grade reading level or less, and this is a good example of one.)

What they are currently testing for is listed here. Fifty-four diseases/conditions, about seven of which I’ve actually heard of.

And God help you if you get a false positive on one of the tests!