Several people have pointed me to Mary Carmichael’s piece for Nature, Newborn screening: A spot of trouble. It’s free, but you have to register. The subheading is: “By raising hell about newborn blood-spot screening, Twila Brase could jeopardize public-health programmes and derail research. The problem is, she has a point.”
The broader issue is “genetic privacy,” and the nature of consent in our public health system. Here’s an interesting paragraph which gets to some of the things we’ve discussed here before:
Twila Brase was not always the kind of person who hands out politically charged propaganda in airports. On a first meeting at her modest office in a shopping plaza in St Paul, Minnesota, she seems more like the unassuming nurse she was back in 1995 — before she began her second life as a bioethical gadfly, and before she had started making YouTube videos that accuse her state of commandeering the DNA of children as “government property” through widespread newborn screening programmes. Her voice is quiet and level. It is difficult to write her off as a conspiracy theorist: she simply doesn’t sound like one, even when, 4.5 minutes into making the case against screening, she suggests that “some researchers” might be trying to convince the state to test day-old infants for genes linked to “a tendency towards violence”.
Here’s the problem, as I’ve noted before the government already has an excellent predictor of your predisposition to violence: your birth certificate. Genetic information only adds value on the margin, many of the things we can predict about people, from height to I.Q. to personality, are reasonably predicted by easy to access genealogical and sociological information.
But I do think that there are real concerns with the way large institutions take our genetic material, and then don’t tell us what’s they’re doing with it. I’m not scared about government or corporate biobanking, there are many more easy ways to “get me” than to be devilish with my DNA. But transparency and trust should go both ways. They better know whose DNA is whose, and they better willing to give me a sample if I want it if it is mine or my child’s. Mischa Angrist has covered this area thoroughly, so I’ll just let it go.
Addendum: Yes, I do think that as a practical matter security protocols are going to be such that there will be constant breaches and people will have access to your or your children’s genomes. I don’t think this is that worrisome, but it’s a real issue, and these institutions should own up to it, and provide some real value to the individuals whom it wishes to recruit for the greater good of science and public health. There are real trade-offs here, and we shouldn’t pretend otherwise.