NZ bioethics council

Hi All,

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 To quote from its website (recently, as of Jan 2010 defunct, along with the council itself; following link to an archived version of the site) ‘Toi te Taiao: New Zealand’s Bioethics Council was formed with the aim of enhancing New Zealand’s understanding of the cultural, ethical and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.

Nick Agar

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6 thoughts on “NZ bioethics council

  1. Thanks for providing a good description of “Who gets born? A report on the cultural, ethical and spiritual issues raised by pre-birth testing.” The idea of parents making autonomous choices seems attractive, but there are two serious issues that are not addressed well in this notion. But I have some difficulty in believing this is truly an autonomous choice.
    An autonomous choice has to be a fully informed choice based on unbiased information. In many cases, I believe the health care system is far from unbiased. They present a bleak view to parents and in some cases have been known to try to tell them that a choice to have a child with a disability is a bad choice. The very fact that we are willing to test and ask parents, “do you really want a child like that?” referring to disability but we do not raise the question about other child attributes betrays this bias.
    Following, the post World-War II widespread repudiation of Eugenics, in 1947, Sheldon Reed, coined the term “genetic counseling” as part of his work for the Dight Foundation, an organization devoted to eugenics. As Frederick Osborn, a founder of the American Eugenics Association, argued in 1956, since we would no longer be able to force eugenics on people, we needed to shape them into thinking that eugenic decisions were in their own best interest, “It is surely possible to build a system of voluntary unconscious selection.”
    I don’t believe that the health care system today or all genetic counsellors today are deliberately trying to enforce a the eugenics agenda, but I do think we need to be careful about calling what may be a system of “voluntary unconscious selection” an “autonomous choice” of families.

  2. There’s been some very good ethnographic work done on prenatal counselling (mainly dealing with amnioscentesis) – e.g. Rayna Rapp’s Testing Women, Testing the Fetus – which supports the argument that autonomous and informed choice isn’t what actually happens in the clinical settings. As a recent counsellee, I can offer my experience as corroboration: the “genetic counselling” we received consisted of a group session in which we were lectured by someone whom I presume was a postdoc in genetics, who bgean with an incomprehensible description of how DNA recombines, and followed up with a laundry list of trisomies and other anomalies, most of which were “incompatible with life” (and, as I discovered later by Googling, extremely rare). Not surprisingly, there were no questions from the freaked-out audience. The session left two main impressions: first, that genetic havoc of all sorts stalks people who get pregnant over age 35; and second, that any genetic anomaly means your kid is toast, and the only thing you can do is terminate the pregnancy. I don’t think most people in the audience really grasped the notions of risk and probability that were tossed around in the session (and in pregnancy discourse in general, judging by the discussions that go on on pregnancy and prenatal internet discussion boards). Someday, I’m going to write a book called “Basic Probability Theory for Pregnant People”.

  3. I think I’ve finally sussed out how to post messages to this forum…. I guess I agree with these worries about informed consent. People misunderstand probabilistic information, and make mistakes about medicine – we tend to think that going to doctor about an elbow itch inevitably takes us from a situation of uncertainty (‘what is it?’) to one of certainty (‘it’s nothing’ or ‘it’s cancer’). In the pre-birth testing cases, even if they aren’t aware that they’re doing it genetic counsellors, obstetricians … often impose their views about what should happen. They overwhelm people with the statistics and overawe them with lurid descriptions of possible genetic conditions. Nevertheless we do get close enough to the ideal of informed consent for it to be worth providing people with information about probabilities etc. If we didn’t think so wouldn’t we opt either for a situation in which your obstetrician just tells you she’s scheduled your abortion Monday afternoon, or one in which there’s just no point in bothering with nuchal scans etc.

  4. Is autonomous and informed choice even possible in our culture? We all bring our biases – doctors, counselors and citizens alike all been influenced by multiple streams of experiences, images, words, ideals, philosophies that shout what sort of people there should be – all of which I was completely oblivious to until my daughter came along and exposed the lies.

    One question: In the blog description, I read that the blog is focused on concerns raised about human variation, normalcy and enhancement. But what is the hope of these conversations?

  5. On the hope: generating some informed discussions itself would be a good thing, especially in a world that confronts us with all sorts of mechanisms of bias. For some of us , the conversations will bring news; for others, a different perspective on a topic that we’ve thought about before. And maybe thinking about some of what arises here will help in thinking about other issues that we bump into in an increasingly technology-enhanced world.

  6. Pingback: The Best Predictive Health Ethics Blogs – June 2008 | Indiana Bioethics

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