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 …