A new report by the UK's Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.
NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman's blood to estimate the chance that the fetus has Down's, Edwards' or Patau's syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.
The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down's, Patau's or Edwards' syndromes.
The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.
In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.
The Council is clearly worried about private providers who might be more interested in selling the test than in giving women genetic and personal counselling.
The report devotes a whole chapter to an analysis of the ethics of NIPT, with much “on the one hand” and “on the other hand”. However, it basically endorses what it calls “liberal eugenics”: that techniques “capable of improving the genetics of future children are acceptable only when they are freely chosen by individual prospective parents, rather than when they are encouraged or imposed by the state”.
Unfortunately, the report’s reasoning is that pre-natal testing may have become so intertwined with modern reproduction patterns that eventually it will be difficult to ban anything. A woman’s right to choose will nearly always trump the right of the disabled to live:
“The enhanced reproductive choices provided by NIPT are continuous with those provided by reproductive options that have helped to make our society fairer and more equal for women and are likely to support these trends, insofar as they increase the control that women are able to exert over the circumstances under which they become mothers.”All in all, the report gives the impression that the UK Government, like King Canute, is attempting vainly to halt the advance of controversial policies like sex-selective abortions and parental eugenics with a dike of words. As a recent article in the AMA Journal of Ethics contended, NIPT is likely “to cause the category of ‘normal to diminish and the category of ‘abnormal’ to grow”.
A State Senator in Hawaii, Breene Harimoto gave an emotional address this week to persuade his colleagues to vote against a bill for legalising physician-assisted suicide for the terminally ill. He said that in 2015 he had been diagnosed with pancreatic cancer, which has a low survival rate and can be quite painful. But he was cured. “It is a miracle that I am still alive,” he said.
His point was that “terminal illness” is almost meaningless. Margaret Dore, a Seattle lawyer who lobbied against the bill, recalls an even more dramatic incident. “A few years ago, I was met at the airport by a man who at age 18 or 19 had been diagnosed with ALS (Lou Gehrig's disease) and given 3 to 5 years to live, at which time he would die by paralysis. His diagnosis had been confirmed by the Mayo Clinic. When he met me at the airport, he was 74 years old. The disease progression had stopped on its own."
If Senator Harimoto or Ms Dore’s friend had the option of assisted suicide, they might stopped fighting their disease and chosen a quick death. They would have chopped decades off their lives. “Terminal illness” is a pillar of assisted suicide legislation – and it just doesn’t make sense.
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