Baby Genes
a short summery post where we consider the equally scary questions, "How many more weeks till the semester starts?" and "What does New Jersey want with your baby's DNA?"
Baby “jeans”? Oh Bing AI you slay me.
Hello friends, the summer has all but flown by and that means it’s syllabus season!
It’s a magical time where we take our syllabi, put up on the rack and pop the hood (I know nothing about cars). I’ve been tinkering with my ethical theory course and I’ll share my bioethics syllabi with you before the semester begins.
Meantime, here’s a scary medical description for you. It seems the state of New Jersey has been taking newborn’s blood and doing all sorts of things with the DNA. Elizabeth Nolan Brown at Reason Magazine reports that like every state, New Jersey makes it mandatory to collect blood from newborns to screen for diseases.
In New Jersey, according to Brown, the parents are told this blood draw is mandatory. What they aren’t told is there are religious exemptions but more importantly they aren’t told what happens to the blood after the screenings are done.
As Brown notes, “The state holds on to these blood samples for 23 years putting no restrictions on how they can be used. In at least one instance, a newborn blood sample was used to tied the baby’s father to a crime.”
Legal evidentiary concerns aside, the real worry is that health officials are considering adding “genomic sequencing” and the New Jersey Newborn Screening Advisory Review Committe or NSARC (I’m so not kidding) met to consider among other things, whether the genomic sequencing should also be mandatory or optional.
Doesn’t this all sound a bit familiar? Henrietta Lacks and the skin book ring a bell? Both highlight the rights to our body and the duties to use someone’s body after their death.
Except in this case, the rights in question belong to someone still alive, but the uses of their blood are equally concerning. “Some states were found to be selling the blood samples to researchers, or turning the blood over to the Pentagon’s DNA registry.” All without the parents permission and in many cases the parents think this is mandatory.
So if you (or your professor) are presenting on Henrietta Lacks and some smarty McSmartypants says, “Well that would never happen today, would it?” You can point out that, in fact, "“Um actually, it does happen.”
Make sure you add “actually” or it won’t be as satisfying or insufferable. Trust me.
