Tuesday 13 September 2016

Eugenics – could NIPT for Down’s Syndrome bring us full-circle?

Is it wrong to kill disabled people if caring for them costs more than identifying and destroying them?

The Nazis believed killing in these circumstances was not only right but a public duty and the German public was softened up to accept it through a skilful propaganda campaign which began in the classroom.

Leo Alexander, an American psychiatrist who gave evidence at the Nuremberg trials, described the process in his classic article ‘Medical Science under dictatorship’, published in the New England Journal of Medicine in 1949:

‘Acceptance of this ideology was implanted even in the children. A widely used high-school mathematics text, "Mathematics in the Service of National Political Education," includes problems stated in distorted terms of the cost of caring for and rehabilitating the chronically sick and crippled. One of the problems asked, for instance, how many new housing units could be built and how many marriage-allowance loans could be given to newly married couples for the amount of money it cost the state to care for the “crippled, the criminal and the insane”’

In a seminal article in the 1996 British Medical Journal, ‘Not a slippery slope or sudden subversion: German medicine and National Socialism in 1933’, Hartmut Hanauske-Abel outlined just how meticulously they went about it:

‘The 70 273 futile or terminal patients "disinfected" (murdered) in German killing hospitals up to 1 September 1941 are calculated to free up "4 781 339.72 kg of bread, 19 754 325.27 kg of potatoes . . .," a total of "33 733 003.40 kg" of 17 categories of food, plus "2 124 568 eggs." Projected over 10 years, these savings are predicted to amount to "400 244 520 kg" of 20 categories of food worth "141 775 573.80 Reichsmarks." Removal of these patients from the wards saves estimated hospital expenses of "245 955.50 Reichsmarks per day," or "88 543 980.00 Reichsmarks per year.’

We are shocked by the shameful cold-bloodedness of these calculations and the deliberate way in which the ‘disinfecting’ was carried out. We are thankful we have learnt the lessons of history. But have we?

There is evidence that these kinds of cost-benefit decisions might be creeping back. In the 1990s, the past-president of the European Bank for Reconstruction and Development, Jacques Attali, made the following pronouncement in L'Avenir de la vie:

'As soon as he goes beyond 60-65 years of age man lives beyond his capacity to produce, and he costs society a lot of money... euthanasia will be one of the essential instruments of our future societies.'

But the area where ‘cost-benefit’ calculations are most evident, and discussed quite shamelessly in the medical literature, is prenatal diagnosis and abortion for congenital abnormalities.

About 1% of all abortions in Britain are performed under Ground D of the Abortion Act 1967, effectively for fetal illness or disability. And one of the commonest causes, accounting for about one in three of all these abortions, is chromosomal abnormality. The most common cause of this is trisomy 21 (T21) or Down’s Syndrome. Currently about 90% of all babies with Down's Syndrome detected before birth are 'terminated'.

We don’t hear people openly saying that we should kill babies with Down’s Syndrome before birth because of the burden they create for society. We don’t use that language. But the sentiments are strongly and deeply felt and the issue has been debated in medical journals for many years. Most recently we see it in evidence given by medical bodies to the UK National Screening Committee’s (UKNSC) recent consultation on screening for fetal DNA (cfDNA) in pregnancy.

The NHS is close to introducing a new test for pregnant women that will make it much easier to detect and search out any babies with Down's Syndrome (DS) (see previous CMF blog posts here and here).

The new test, NIPT (non-invasive prenatal screening), involves taking a sample of blood from the pregnant woman which is then examined for abnormal fetal DNA. It is called 'non-invasive' because it doesn't involve 'invading' the mother's womb, as chorion villus screening and amniocentesis do. It, therefore, carries no risk of miscarrying a 'normal' pregnancy.

In their evidence to the consultation the Royal College of Obstetricians and Gynaecologists (RCOG) addressed the cost-benefit issue as follows (emphasis mine):

‘The UKNSC is consulting on offering cfDNA testing to women with a 1 in 150 or greater risk of trisomy. The decision NOT to offer cfDNA testing to all women (primary screen) is based upon the cost (“the UKNSC were concerned that this represented a large opportunity cost and that these resources might be better used by the NHS”). If the decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome (bearing in mind that cfDNA testing as a primary screen test will identify approximately 289 more babies with trisomies). Such an economic analysis may (or may not) suggest that cfDNA testing for all is cost-effective.’

In other words, the RCOG thinks NIPT will be cost-effective if it costs less to detect and kill babies with Down’s Syndrome than it does to provide them with a lifetime of care and support.

In a similar vein, the British Maternal & Fetal Medicine Society (BMFMS) asks (p20), ‘Why isn’t the cost of caring for a child with T21 included in the analysis?’

One might argue that these doctors' groups are different from the Nazis - they are not dragging adults and children with Down’s Syndrome to the gas chamber - and clearly that is true.

But my point is that their reasoning is the same reasoning that the Nazis used – that if the cost of care is higher than the cost of killing then homicide is justifiable on economic grounds.

Why do they fail to see this more clearly? I wonder if it is because these doctors (the leaders of the RCOG and Fetal Medicine Society) attribute little if any value to life before birth. In other words, they view a baby in the womb in a similar way to how Hitler viewed Jewish people; as a drain on resources and surplus to requirement. Not real people. So, they reason that if we have the technology, and can make it safe for the mother - and she wants it - then what’s wrong with it? The baby’s life has no moral value but it does nevertheless carry an economic cost.

Autonomy says ‘we can choose’. Technology says ‘we can do it’. Moral relativism says ‘why not?’

The ‘Don’t screen us out’ campaign (DSUO) is trying to change these perceptions. DSUO describes itself ‘as a grass-roots initiative supported by a collection of people with Down’s syndrome, families and Down’s Syndrome advocate groups led by Saving Downs Syndrome’.

They argue that NIPT does harm to babies with Down’s syndrome and the Down’s syndrome community, violates the Convention of the rights of persons with disabilities and enables eugenic discrimination.

These are strong charges indeed. But if we look at it logically – their argument does make sense. Why are attitudes to disabled people outside the womb so different to the attitudes (expressed above) to those inside the womb?


The key question is this - should the weak be sacrificed for the strong or should the strong make sacrifices for the weak? The Christian answer is clear - bearing one another's burdens is at the very heart of the Gospel. We walk in the steps of the all-powerful creator who laid aside everything and entered this world at great personal cost to rescue, care and serve.

There is no doubt that providing life-time support for people with Down's Syndrome can be costly in emotional and economic terms - but many families will testify that there are great rewards too and that they have much to teach us.

If we are going to talk about cost, then the cost of bringing up a so-called 'average' child in the UK (in goods, university, school and preschool fees, lost parental earnings etc) is around £230,000. Yet no one is seriously suggesting that we apply the economic argument to 'average' children.

So what does this tell us about our attitudes to people with Down's Syndrome? Why are we not up in arms against these doctors who seem to value these people's lives so cheaply? Is it perhaps that it is not just the doctors who are making these assessments? And yet is not the real measure of what kind of a society we are seen in the way we treat those with special needs?  

Monday 12 September 2016

Is Professor Basky Thilaganathan deliberately misleading parliament over the results of NIPT for Down’s syndrome?

Here's a new story involving disabled people, taxpayers' money, apparent scientific deception, a biotechnology company looking for profits and the NHS.

The NHS is close to introducing a new test for pregnant women that will make it much easier to detect and search out any babies with Down's Syndrome (DS) (see previous CMF blog posts here and here).

Jeremy Hunt, the Health Secretary, is expected to respond to a recommendation from the National Screening Committee for the roll-out of non-invasive prenatal testing (NIPT) any time now. NIPT involves taking a sample of blood from the pregnant woman which is then examined for abnormal fetal DNA. It is called 'non-invasive' because it doesn't involve 'invading' the mother's womb, as chorion villus screening and amniocentesis do. It therefore carries no risk of miscarrying a 'normal' pregnancy.

The Nuffield Council of Bioethics is also expected to publish a report on the new technology this autumn (see CMF's submissions to both Nuffield and the UK National Screening Committee).

The move to make NIPT available on the NHS is extremely controversial and has led to the launch of the ‘Don’t screen us out’ campaign (DSUO). DSUO describes itself ‘as a grass-roots initiative supported by a collection of people with Down’s syndrome, families and Down’s Syndrome advocate groups led by Saving Downs Syndrome’.

They argue that the result will be ‘a profound increase in the number of children with Down’s syndrome screened out by termination’.

They say that, given the fact that 90% of babies who are prenatally diagnosed with Down’s syndrome are currently aborted, making the test available on the NHS is projected to lead to 92 more babies with Down’s syndrome being aborted each year (90% of the 102 more children with Down’s syndrome who would be detected annually by NIPT according to the National Institute for Health and Research RAPID evaluation study  projections).

The same RAPID study also predicts that 25 miscarriages would be prevented by implementation of the technology because fewer women would go on to undergo more invasive chorion villus sampling (CVS ) or amniocentesis in order to diagnose the condition. So it is a trade-off of 25 'normal' babies saved for 92 babies with Down's syndrome aborted.

Don’t Screen us Out have launched an open letter to Jeremy Hunt demanding that his department stop ignoring the concerns of people with Down’s syndrome, their families and the wider community and start consulting them on the proposals. But thus far the health minister has not responded.

The move to introduce NIPT into the NHS is backed by powerful commercial interests. In March 2015 the St George’s University Hospitals NHS Foundation Trust revealed that it was joining forces with the British firm, Premaitha Health to bring in this new screening test. Clearly, if the health secretary gives the green light to pay for this new test to be rolled out on the NHS, then Premaitha, which describes the test as its ‘flagship product’, along with its shareholders, stands to make a lot of money. Millions in fact.

Premaitha admitted this much in a press release earlier this year: 'Premaitha anticipates that the endorsement by the NHS will accelerate private payer market growth in the UK'. More importantly, it will put them in pole position to pitch for NHS hospital tenders. 

Understandably, St Georges, which has a commercial relationship with Premaitha, is defending the test. Earlier this summer, Professor Basky Thilaganathan (pictured), head of the fetal medicine unit at the trust, said: ‘NIPT screening is an absolute sea change in how we have been doing things in the last 50 years. It has the potential to virtually eradicate invasive testing.’

According to the Evening Standard on 12 August, he dismissed claims from DSUO that extending the test would lead to an increase in abortions and claimed that more than 300 miscarriages a year could be prevented if the NIPT (non-invasive prenatal test) was used across the NHS. 

But DSUO have been questioning the evidence for his claims. And a new study published in the British Medical Journal on 4 July 2016 backs up their concerns.

The new BMJ study evaluates the outcomes and costs of implementing NIPT for Down’s syndrome into NHS maternity care and covers eight diverse maternity units. The lead author is Lyn Chitty, Professor of Genetics and Genomic Medicine, UCL Institute of Child Health, London.

Chitty and her colleagues calculate that in an annual screening population of 698,500, offering NIPT (as a contingent test to women with a Down’s syndrome screening risk of at least 1/150) would increase detection by 195 cases with 3,368 fewer invasive tests and, crucially, only 17 fewer procedure related miscarriages (not 300!).

Chitty’s projected decrease in miscarriages (17) is very close to the figure given by the RAPID study (25), and the difference is not statistically significant. But both figures are a far cry from Basky Thilaganathan’s 300, a number almost 20 times higher.

Furthermore, if rolling out NIPT will result in 195 more babies with Down’s syndrome being detected (Chitty), then assuming that 90% will then be aborted (the standard quoted figure), that means almost 180 more abortions for Down’s syndrome each year. Even if the percentage is only ~70% going on to abort, as Chitty suggests for the group having NIPT, we are still talking about over 130 more abortions each year of these affected babies.

DSUO argue that this does harm to babies with Down’s syndrome and the Down’s syndrome community, violates the Convention of the rights of persons with disabilities and enables eugenic discrimination. These are strong charges.

It is quite extraordinary, in the face of the facts just presented, that Prof Thilaganathan can both deny that the test will result in more deaths of babies with Down’s syndrome, and claim that the miscarriages prevented will be almost 20 times higher than the RAPID and Chitty studies predict.

Does he know something we don’t, or is he deliberately misleading the public and parliament in order to advance an ideological and commercial agenda?

The burden of proof is upon Thilaganathan and St Georges to reveal the scientific evidence supporting his claims, or if there actually isn’t any, publically to apologise to DSUO, the public, people with Down’s syndrome and their families and parliament itself for telling lies. 

At very least these latest developments should lead Jeremy Hunt to reflect more on the concerns raised by DSUO and the communities of Down's syndrome families they represent before deciding to invest scarce health service resources on this new venture. More questions need answering and more public scrutiny is required.

Meanwhile I'll be taking a closer look at some of the commercial interests and ideological drivers behind the scenes driving these new tests. Watch this space.