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.

Liverpool Care Pathway – nine points for the government to consider in its review

Secretary of State for Health, Jeremy Hunt (pictured), yesterday hailed the controversial Liverpool Care Pathway (LCP) for patients who are dying as ‘a fantastic step forward’ in the way hospitals support the terminally ill.

I agree that the LCP is a useful clinical tool that has helped many thousands of people experience better care in the last hours or days of life, but like any tool it must be used with the proper indications and by properly trained staff.

Every airline accident should make our next air trip safer; in the same way every abuse or misuse of the LCP should mean that the same mistake never occurs again.

CMF has recently called on the government to consider nine key points in its recently announced review of the LCP which is currently used with around 130,000 people a year, about a third of annual deaths in the UK.

To iron out the abuses that have been reported, several key measures need to be implemented:

1.It should be made absolutely clear that no one who is not imminently dying within hours, or at most two or three days, should be placed on the LCP and anyone placed on it who shows improvement should be taken off it. These assessments should be made by senior clinicians.

2.No one should be placed on the LCP without it being discussed with the relative or carer (although the latter do not need to give consent).

3.Every patient placed on the LCP must be regularly monitored and reassessed by a multidisciplinary team.

4.The present documentation is far too complex and needs to be simplified and standardised so that those implementing it can easily follow the guidelines and supervisors can easily tell what is going on with each patient.

5.Training and supervision of those using the pathway needs to be standardised and improved and formal training should be required before any healthcare professional is able to use it.

6.An annual audit needs to be carried out and all suboptimal use identified promptly acted upon.

7.Non-clinical priorities in the use of the pathway, especially financial priorities, must be eradicated and every patient treated solely according to their need. In this connection it would be far better to link CQUIN payments to staff training in the use of the pathway rather than numbers of patients placed on the pathway.

8.Communication to relatives both by health professionals and organisations involved in LCP implementation needs to be substantially improved.

9.Those misusing the LCP should be quickly identified and in the case of abuse reported to the appropriate authorities (General Medical Council, Nurses and Midwifery Council or Health and Care Professions Council).

Writing in a recent review for CMF’s journal Triple Helix, Dr Jeff Stephenson, a Devon-based consultant in palliative care has said:

‘The LCP represents a pragmatic and effective response to some of the suffering experienced by many in the last days of life. It remains, however, a tool and it is only as good as those who use it. There is always potential for misuse and abuse and there are undoubtedly instances where this occurs. Where these arise by intention then those involved should be held to account, but more often they occur through poor understanding and inadequate training. We owe it to patients to not only furnish the means to better care, but also to equip adequately those who provide it.’

Stephenson’s whole article is well worthy of study.

My letter to Jeremy Hunt about BBC media portrayal of suicide

Last week I wrote on behalf of Care Not Killing to Jeremy Hunt (pictured), the Secretary of State for Cuture, Olympics, Media and Sport. I asked him to carry out an investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates. I also wrote along similar lines to the Secretary of State for Health.

Whilst the BBC has issued a statement denying bias in its media coverage of assisted suicide (as expected!) it has not yet addressed the matter of suicide contagion. That in itself is very interesting given that the issue has huge media coverage all over the world in the last week. Here is my letter to Mr Hunt:

The Secretary of State for Culture, Olympics, Media and Sport

Dear Sir,

Re Link between BBC coverage of assisted suicide and English suicide rates

I am writing to ask you, as Secretary of State for Culture, Olympics, Media and Sport, to carry out an urgent investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates.

The television programme, ‘Choosing to Die’, featuring celebrity author Terry Pratchett and scheduled to be shown BBC2 at 2100 on Monday 13 June, features the death on screen of a British man, Peter Smedley, at the Dignitas facility in Zurich. The programme has already had a huge amount of advance media publicity.

On the basis of its reported contents, it breaches international and national guidelines on suicide portrayal. As such it poses a significant risk to vulnerable people and, on the basis of available evidence, it is highly likely that copycat suicides will follow the screening.

The BBC editorial guidelines note that ‘factual reporting and fictional portrayal of suicide, attempted suicide and self-harm have the potential to make such actions appear possible, and even appropriate, to the vulnerable’.

The WHO international guidelines on suicide portrayal refer to over 50 published studies, systematic reviews of which have consistently drawn the same conclusion, that media reporting of suicide can lead to imitative suicidal behaviours. This phenomenon is variably termed suicide contagion, copycat suicide, suicide cluster or the Werther effect.

The WHO recommendations to media professionals include the following:

•Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems
•Avoid prominent placement and undue repetition of stories about suicide
•Avoid explicit description of the method used in a completed or attempted suicide
•Avoid providing detailed information about the site of a completed or attempted suicide
•Exercise caution in using photographs or video footage
•Take particular care in reporting celebrity suicides

Since 2008 the BBC has screened no less than five docudramas and documentaries portraying assisted suicide in a positive light and none giving the opposite perspective. The above recommendations have been repeatedly and consistently breached.

Over this same period, and previously, the BBC has granted an international platform to many personal accounts about assisted suicide. Cases are often highlighted in painstaking detail featuring long personal interviews and often with substantial extraneous information about the individual’s personal life.

Contrary views are either not expressed, or are at best relegated to single sentence reactionary sound-bites. This creates the false impression that the small minority these cases constitute are somehow representative of all people facing suffering or death.

The programme which the BBC intends to screen on Monday constitutes a major risk to vulnerable people and may also be in breach of the Suicide Act 1961 which was amended in 2010 by the Coroners and Justice Act, making it illegal to ‘encourage or assist’ the suicide of another person. This new wording was adopted specifically to counter the encouragement of suicide by media or internet amidst concerns following the Bridgend cluster of suicides in 2007.

Figures from the Office for National Statistics show that suicides in England rose from 3,993 in 2007 to 4,390 in 2009 – an overall increase of 10% and the greatest two year rise in over a decade. Amongst males aged 45-74, the age group of Terry Pratchett and suicide victim Peter Smedley, the rise has been 16% from 1,174 to 1370. The latter figure is the highest in over 20 years.

It is noteworthy that the national suicide prevention strategy for England, launched in 2002, is failing dismally to reach its targets. In addition no annual reports seem to be available since 2008.

I attach further reference information and look forward to hearing from you at your earliest convenience.

Yours sincerely


Peter Saunders
Campaign Director
Care Not Killing Alliance