Looks like a really interesting blog going on here! Rob asked me to make a couple of comments on the NZ Bioethics Council’s report of pre-birth testing Who gets born? A report on the cultural, ethical and spiritual issues raised by pre-birth testing. To quote from its website (recently, as of Jan 2010 defunct, along with the council itself; following link to an archived version of the site) ‘Toi te Taiao: New Zealand’s Bioethics Council was formed with the aim of enhancing New Zealand’s understanding of the cultural, ethical and spiritual aspects of biotechnology, and ensuring that the use of biotechnology has regard for New Zealanders’ values.’ The spur for the recent report was the recent decision in NZ to publicly fund Pre Implantation Genetic Diagnosis for ‘high risk’ couples. It’s up to government to decide how, if at all, the Council’s advice should be translated into policy.
The report’s a conscientiously small ‘l’ liberal document. Many of its recommendations could have been directly cribbed from the pages of John Robertson’s book, Children of Choice. The emphasis is very much on facilitating parental choice, with health professionals given the role of supplying parents with the information they need to make choices consistent with their values. Saviour siblings are OK – Parents can attempt to conceive saviour children naturally so it would be wrong to stop them using PGD to improve their chances of having a child who could provide cord blood etc that could save a sibling. Parents should be allowed to use PGD to avoid conceiving children with health problems or to have pre-birth tests to avoid giving birth to such children. It’s up to them to decide what counts as a serious enough condition – Huntington’s, diabetes, or asthma – and what counts as too high a risk of such a condition. The Council’s open to using PGD to select against unaffected carrier embryos for conditions such as cystic fibrosis. This ‘should be a matter for parental and clinical judgment.’ The Council seeks to balance these recommendations with pleas for increased support for those who continue pregnancies after a disabling condition is diagnosed.
The council failed to find sufficient cultural, ethical and spiritual reasons to prohibit the use of PGD for sex selection for social reasons such as ‘family balancing.’
The report’s been … somewhat controversial. The Council was very diligent in soliciting information from a wide variety of interested parties. There have been complaints from religious and disabilities groups that they were politely listened to but that little of what they said made it through to the final recommendations. I wonder if there’s a bit of fallacy of bureaucratic representativeness here – if a committee’s composition approximately matches the representation of various communities in the general population then its pronouncements must be representative of the viewpoints of those different communities.
In any event, the NZ Council’s ‘too liberal’ account of NZers’ views about reproduction arguably makes an interesting – and arguably refreshing – contrast to the US Bioethics Council’s markedly conservative formulation of Americans’ thinking.