I wonder what Michele Bachmann thinks about this. In fact, I’ll bet all the teabaggers could get upset about this if someone feeds it to them the right way.

There was a recent discussion of the cost factor of a patented test for genetic traits, perhaps npr*s sci fri; the context was how far to let private enterprise go in controlling pricepoint when competition is banned during the patent*s timespan; the philosophic question voiced being whether dna actually ought to enjoy some kind of biologic commons exemption from some practices of private for-profit enterprise, and patent law.

Late to the party, but here are my two cents.

DISCLOSURE: I have both an MD and a PhD (Human Genetics) from the University of Michigan, and I’m now a board-certified clinical geneticist at Baylor College of Medicine.

It’s a bit inaccurate to call newborn screening “genetic testing”, which implies that the testing looks directly at DNA. In reality, while the tests typically do screen for a large number of genetic diseases, they are usually done by looking for abnormal levels of chemical metabolites in the blood, NOT by looking at the infant’s DNA. The samples are usually held for quality control reasons more than anything else. As far as I know, they can be accessed for research purposes only if you have obtained informed consent from the parents, and even then, there are a lot of hoops you have to jump through.

The statement that “doctors [are] submitting their DNA for research without either notice or consent” is also misleading. Newborn screening is NOT “research” in the technical sense. Medical testing is usually classified as “clinical” (if both the test and laboratory have met all of the appropriate regulatory requirements) or “research”. Research testing is usually done only after obtaining WRITTEN informed consent, but it can be performed in laboratories that specialize in research studies and are less tightly regulated. The results are NOT considered to be part of the medical record.

It usually IS true that the screening is done “without notice or consent”, mainly because it’s part of the “routine” for every newborn. There are a LOT of things that are part of this routine that most people are never told about, mainly because they’re fairly benign. (For example, almost all newborns are treated for possible ocular gonorrhea, not because it’s common, but because the consequences of NOT treating for it are really bad, while the treatment (eye drops) is benign.) In addition, newborn screens are usually required by law–they’re not something that doctors WANT to do; they’re something they HAVE to do.

The fear that the samples could be used to make DNA profiles of every baby is understandable, but I think it’s important to understand that generating a DNA profile requires a significant amount of time and money, so for practical purposes, it’s not something that I would lose much sleep over.

On a personal note to ew: Your willingness to participate in research studies is laudable, but please understand that few (if any) breast cancer researchers are going to want to study your family if you haven’t already had the (expensive) tests for BRCA1 and BRCA2. The reason for this is purely practical. Research studies cost a lot of time and money on the part of the research team, and they’re only going to want to spend a lot of time and energy on you and your family if they already know that your breast cancer was NOT the result of a mutation in BRCA1 or BRCA2. It’s hard for them to do these tests themselves, since the genes are patented. So they’re going to want you to have to test done by the patent holders first, so that they can exclude those two genes as a cause of your early-onset breast cancer. Make sense?