Data termination

Awww, nutbunnies.

In April, Paula Penfold and Eugene Bingham reported that 2500 women had had their requests for abortion turned down over the last decade.

Me, and a few others, immediately started imagining some rather interesting research that could be done if those records could be linked up in IDI. So I started making enquiries. It's not a study I'd ever do as part of the day-job, but if a few queries from me could help the academics who would actually do the studies and tell me interesting things about the world I didn't know before - well, I was happy to poke around to see whether that data could be linked up in IDI.

It can't be. Or, at least, not easily. Consulting physicians provide up to the government reporting on approvals and rejections, case-by-case, but with an anonymous ID number attached to each case where only the consulting physician has the key. The government can request more detail, and the physician can then check back in the physician's notes. But the government itself doesn't have the keys for linking the records to the de-identified records held in IDI - like by health ID number. It just can't be done without getting physicians to agree to sharing more of their notes up the system - and that's a far bigger battle.

It's a darned shame though. Linked up in IDI, here's the kinds of things that friends back in academia could have looked at:

• Outcomes (across a wide range of indicators) for women who proceed with termination compared with: 
• statistically comparable women who never requested termination;
• statistically comparable women who requested termination, were approved for termination, but then changed their minds (a birth happened soon enough after the request was approved);
• statistically comparable women whose request for termination was declined.
• Outcomes (across a wide range of indicators) for children whose mothers never sought termination compared with:
• children of statistically comparable women who requested termination, were approved, but changed their minds;
• children of statistically comparable women whose requests for termination were denied;
• the children of statistically comparable women who did not give birth after being approved for termination (you can't tell whether the termination proceeded or whether a miscarriage otherwise obtained) but who did give birth at a later date.
• Lifetime parity among women among women whose requests were approved compared to those whose requests were not - how much of this is a decision about the timing of children rather than the number.

I'm sure you can think of a lot more research that looks to be near-impossible. 

Many thanks to the patient communications advisor at the Ministry of Justice who walked me through how the system operates. I think she had to do a fair bit of running around to sort it all out. So big plaudits for public sector helpfulness on this one. No mucking around treating things as OIA requests and then long turnarounds on questions of clarification, just helpful replies. Very happy on that front. A++++ recommendation. 

Otago Bioethics: Downs Edition

Robert Cole and Gareth Jones, a student and Emeritus Professor, respectively, at the University of Otago, provide a sensitive and balanced analysis of ethical issues around enhanced prenatal screening for Down's Syndrome [gated, sorry].

The new test is non-invasive, relying on a blood test for the mother rather than amniocentesis, which imposes risks on the foetus and consequently requires a fairly grisly cost-benefit analysis for parents where the nuchal scan suggests potential problems: weigh the risks and costs of an accidental miscarriage in the likely case that DS wasn't present against the risk and costs of continuing with the pregnancy if you would have otherwise wished to abort and try again if you had known DS were present.

Now the new test isn't perfect, but Cole and Jones extrapolate to the likely future case where a noninvasive test is very sensitive and can completely replace amniocentesis. Is the DS lobby group "Saving Downs" right that a better test would be eugenic and discriminatory? Cole and Jones weigh things up:

But what would NIPD mean for the DS community? Increased uptake of tests will result in increased detection of DS, and probably more terminations. The number of DS births may, as a result, drop. However, it is unlikely that DS will disappear. Abnormalities escape detection using even the most rigorous diagnostic techniques, and there will always be women who do not wish to undergo testing. 

But as more pregnancies are tested, will DS become a ‘rare’ disorder? In time, perhaps. However, the life expectancy of those with DS is increasing, and is likely to soon approximate that of the non-DS population.15 This will mask, at least temporarily, any effect of NIPD on the prevalence of DS. Hence, even with a rapid increase in the uptake of NIPD, it is unlikely that the numbers of those with DS will change markedly in the near future.

The new procedures have no greater ethical problems than current procedures; it's rather less than obvious that the current procedures are wrong either. Cole and Jones note the main point of both is to provide accurate information to parents to help them in making an informed decision. They conclude:

We concurrently offer prenatal screening and value the disabled by upholding several values in society.

First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a DS pregnancy (to child and family) may outweigh the perceived good from the child’s life.

Second, we value reproductive liberty, the ability to make individual decisions over one’s pregnancy. Others, such as the state, are limited in their control of this right. Alongside these we uphold dignity, respect and justice, realising that those who are disabled demand equal respect as citizens, thereby deserving support from society.29

Inevitably, these values must be held in some tension; but as long as they are recognised as important, we will make sure one (e.g. reproductive liberty) never fully undermines another (e.g. respect for the disabled). From this, we can argue for two compatible viewpoints - that screening is justified, and that the disabled will continue to receive support and respect from society.

I'm not generally a big fan of Otago bioethics, but the article here seems exceptionally mild in its conclusions; it isn't hard to follow Peter Singer in defending stronger conclusions than these. Indeed, you could expect Otago to go further: if Otago Public Health says the State should compel me to act in ways that make me healthier and that potentially consequently cost the Ministry of Health less, over matters of fairly trivial cost to the State, the lifetime burden on public support systems involved in the decision examined by Jones...well, I'm not going to go there. I'll just note that the conclusions here seem very mild and easily defended.

Nevertheless, the Saving Downs people want Professor Jones to resign.

Mike Sullivan, a spokesperson for Saving Downs, said on Wednesday that people with Down syndrome lead good lives and it is inappropriate for a leading academic to suggest that they are a burden.

It seems completely obvious that those choosing to bear and raise children with Down's can derive great joy from their children. It also seems completely obvious that many other parents would find the lifetime costs to be very high, and the opportunity costs in terms of other children they could have otherwise had as replacement to be exceptionally high.

Somebody needs to invite Peter Singer to give some lectures in New Zealand.