Apropos of yesterday’s lengthy article on the anti-abortion lobby’s sham ‘inquiry’ on abortion and disability, we know have a transcript of a second oral evidence session to play with and of the witnesses called one name leapt immediately off the page, that of a Daily Mail journalist, Beezy Marsh.
Marsh, who worked for the Daily Mail as health correspondent from 1998 to 2005 and who still writes for the newspaper, today, as freelancer, stood out because she has form for pushing anti-MMR stories long after it became apparent that there were serious issues with Andrew Wakefield’s original research.
Her 2006 article, ‘Why I am terrified of trusting MMR‘, which appeared in the Telegraph and drew a direct response from Ben Goldacre, is particularly egregious example of thinly veiled anti-vaccine propaganda, not least for the fact that Marsh trade heavily, from the outset, on being both a new mother and health correspondent:
As a health correspondent, I have read endless studies and spoken with experts on both sides of the argument over the safety of the MMR vacination. Now, as my 14-month-old son Idris has been called by the NHS to have his jab, I face the same dilemma as thousands of other parents.
What she fails to mention is that despite her having worked as a health correspondent, she has absolutely no relevant qualifications in that field, i.e. health, medicine or science. Marsh’s biography shows that she graduated from the University of Leeds in 1991 with a BA (Hons) in English and French – so we can infer a GCSE in maths – but otherwise there is nothing else in her background that indicates that she possesses the skills necessary to read and make sense of clinical research.
Bearing that in mind, it is particular telling that the specific point on which Ben Goldacre chose to pick her up related directly to her inability to understand statistical information:
Your report on the MMR vaccination controversy (News, February 12) says “population-based studies are not sensitive enough to pick up problems that may affect a tiny minority of children”. The figures do not support this assertion: autism has increased from one child in 2,500 to one in 250, an increase the anti-MMR lobby ascribes to the vaccine. A tenfold increase is not a “tiny minority”,and figures this large present no problem for the sensitivity of population studies.
The purpose of vaccination is to reduce the prevalence of viruses throughout the population – and ultimately eradicate them – not to protect an individual child. For example, there has been an increase in mumps, from only 200 cases a year to 40,000 since the anti-MMR campaign began, but the increase has been mostly among teenagers, not un-vaccinated babies.
Two things follow from this that will prove to be particularly important when we come to look at her contribution to this ‘inquiry’.
The first is that she is incapable of analysing and interpreting even relatively straightforward statistical information without relying on the opinion of an ‘expert’ to interpret the figures for her.
The second key issue, which follows directly on from the first, is that the exact nature of any information she could possibly provide to this ‘inquiry’ will depend entirely on her choice of ‘expert’. She is, in effect, nothing more than a proxy witness for the ‘expert’ she consulted when trying to make sense of the information on which she gave ‘evidence’.
So, to tackle the obvious question, why was Beezy called to give evidence to this ‘inquiry’?
Here we need to provide a bit of background information about a project called Eurocat, which has nothing whatsoever to do with posting kitteh photos on Facebook.
Eurocat, which is based at the University of Ulster, is a European Union-funded “network of population-based registries for the epidemiologic surveillance of congenital anomalies”.
Translated into English, what this means is it collates and analyses information about birth defects from 43 regional registries around Europe (including several in the UK) tracking the number of diagnoses of different conditions and abnormalities and the outcome of pregnancies where one or more abnormalities has been found.
Why does it do this?
Well, in part, Eurocat is intended to be an early warning system in event that a new drug, environmental pollutant or even a disease, like rubella, cause a sudden and unexpected increase in congenital abnormalities, alerting clinicians and researcher that there’s problem emerging for a cause needs to be identified. It also supplies valuable information to health service planners and policy makers on everything from prevalence rates to the impact of prevention strategies and screening programmes, information that’s need to plan, monitor and evaluate the performance of healthcare services.
So its an important project and one that I doubt all but the most hardcore Eurosceptics would complain about funding via the European Union.
In terms of coverage, Eurocat currently collates information from 43 registries which, collectively, monitor around 1.7 million births a year, around 29% of the European birth population, so it doesn’t track every pregnancy and every diagnosis across Europe but it does collate sufficient data for it to arrive at some reasonably accurate estimates for the prevalence of particular abnormalities at both a national and Europe-wide level. It also tracks the outcomes of pregnancies where a congenital abnormality has been diagnosed from which it can estimate the number of pregnancies ending either a live birth, foetal death or an abortion for each condition/type of abnormality.
And that’s where Beezy enters the picture because, for several years she’s been knocking out articles for the Daily Mail which point out that the estimates for number of abortions of foetuses with a diagnosed abnormality on Eurocat do not tally with the number of abortions recorded under Ground E (substantial risk of serious disability) in the official Department of Health abortion statistics.
Here’s a sample of Beezy’s ‘work’ from an article published by The Sunday Times on 3 February 2013 – and I should point out that the article is behind a paywall, so that link is only worth following if you’re a subscriber.
Hidden abortion of ‘imperfect’ babies
NHS figures are failing to reveal the full scale of termination for correctable deformities
DOZENS of abortions are being carried out every year on foetuses with minor abnormalities such as a cleft lip and palate or club foot — according to figures published as part of a European monitoring project.
The abortions are being performed even though the conditions can be corrected surgically after birth.
In some categories the number of abortions is three times the figure published by the Department of Health, suggesting that many are not being accurately recorded.
The figures that expose the gaps in official UK data have been released by Eurocat, a European network of registers for congenital anomalies. The statistics are taken from a range of sources including NHS foetal medicine specialists, ultrasonographers and genetic testing laboratories, allowing them to track what happens in each case where an abnormality is detected.
The Department of Health’s figures are based on the forms that a doctor conducting an abortion has to submit. According to Eurocat, between 2006 and 2010 157 foetuses were aborted for cleft lip and palate in England and Wales, but just 14 of these show up in Department of Health abortion statistics. In 2010, 24 foetuses were aborted, compared with the seven recorded by the Department of Health.
Over the same period 205 foetuses with club foot were aborted, according to Eurocat, while in 2010 the figure was 37.
Government data on club foot abortions is published only as part of a wider category called “musculoskeletal”. In 2002, the last year for which statistics for club foot alone are available, it recorded just five abortions.
Now, if Beezy is correct then this is potentially a very serious issue but, we also have to remember that Beezy doesn’t do stats and, having looked at Eurocat’s publicly available prevalence data for UK registries myself, there is a very large and important caveat on every data table the significance of which Beezy clearly doesn’t understand at all:
The number of cases in each congenital anomaly subgroup is NOT the number of isolated cases. In particular the outcome, such as fetal deaths (FD) or terminations (TOPFA), for seemingly less severe anomalies may have occurred as the case had other more severe major anomalies.
So, before we even attempt to interpret the Eurocat data we need to be aware of the possibility of double counting in the figures and that the outcomes recorded in some categories do not represent isolated cases but rather relate to foetuses that had more than one congenital abnormality, and these uncertainties about the data are clearly evident in the figures for club foot (talipes equinovarus) for which, between 2007 and 2009, Eurocat records a total of 24 foetal deaths.
So, if we take those figures purely at face value, as Beezy has done in reporting the Eurocat abortion data, then we’re expected to swallow the idea that over a three year period, 24 foetuses died in their mothers’ womb of club foot.
No, of course not. Every single of one of those foetal deaths will have occurred because there was something far more serious that went wrong with each foetus, in addition to it having club feet, and the exact same thing will be true of foetuses for which the recorded outcome is a termination for both club foot, cleft lip/palate and, indeed, other less serious abnormalities.
It’s worth pointing out, for example, that the Eurocat data for ‘cleft lip with or without palate’ and ‘cleft palate’ indicates 22 foetal deaths in the womb between 2007 and 2010 and during the same period 12 foetuses apparently ‘died’ of genital abnormalities to go with 74 ‘deaths’ logged under ‘limb reduction’ (including upper and lower limb reductions’ and 14 ‘deaths’ recorded against both polydactyly (extra fingers or toes) and syndactyly (where two or more fingers or toes are fused together).
Again, we have to ask ourselves do foetuses actually die from these conditions?
So, there’s clearly an element of double counting in the figures, but how much exactly?
Well, luckily enough, in addition to to the individual data for each type of anomaly, the terms used in the data, we also have a line item for all anomalies from which any multiple entries have been excluded, so this line shows us exactly how many foetuses were diagnosed with an abnormality of any description and also the actual number of live births, foetal deaths and abortions. So, if we add up all the figures for individual anomalies and compare this to the all anomalies figure, we can see how many multiple entries are included in the dataset.
So, looking at the data for 2009, which is somewhat more complete than the 2010 dataset, what we find under all anomalies is a total of 6227 foetuses of which, in terms of outcomes, there were 4775 live births, 162 foetal deaths and 1290 abortions.
In the rest of the dataset we have 88 separate categories of anomaly in total and a total of 14731 individual anomalies of which at least 10571 were found pregnancies which ended in the live birth, at least 336 in pregnancies that ended in a foetal death and at least 3289 in pregnancies that ended in an abortion – and I say ‘at least’ here because their are 505 anomalies that we cannot fully account for, which are spread across live births in 18 categories, foetal deaths in 62 categories and abortions in 54 categories where there where data has been suppressed to protect the confidentiality of individuals.
What this gives us, as averages, are 2.21 anomalies per live birth, 2.26 anomalies per foetal death and 2.55 per abortion and one cannot, therefore, make anything at all of the data relating to abortions and conditions such as club foot and cleft lip/palate on the back of this data, because each such case could easily have at least another two congenital abnormalities associated with it, either of which could be serious enough to justify an abortion under ground E. In fact, what the data is telling us is that where congenital abnormalities are identified, the are found at a slightly higher rate in pregnancies that end in an abortion than they are in pregnancies that end in either a live birth or with the foetus dying in the womb, albeit that this still does tell us anything definitively about the actual severity of abnormalities in each individual pregnancy that ended in an abortion.
This is the kind of information that Beezy could quite easily have obtained had she taken the data to an ‘expert’ who knows their way around a set of statistical tables, so basically any halfway decent epidemiologist or medical statistician would have done very nicely.
So who, exactly, did Beezy choose to consult and how did she present this information in her article?
If you’re a fan of Ben Goldacre – and who in right mind isn’t – then you should already be expecting another trip to the journalistic Twilight Zone that is the ‘caveat in paragraph number 19‘ and Beezy, having spent most of her journalistic career writing for the Daily Mail, doesn’t disappoint.
So what we get, in paragraphs 4 and 5 of her article, right after the intro is:
Last night a leading obstetrician said aborting so many foetuses with treatable conditions was “horrific” and described the failure to officially record the terminations as “a disgrace”.
Experts fear doctors are trying to cover up terminations to spare the mother’s feelings at aborting a deformed foetus, or to avoid controversy over weeding out “imperfect” babies. An abortion can be carried out as late into pregnancy as necessary if tests indicate the child will be seriously disabled. Last week a crossparty parliamentary commission was launched to investigate the number of disabled foetuses being terminated.
And you may also notice that our sham ‘inquiry’ has had its status elevated to that of a ‘parliamentary commission’
However, that aside, we then have to wander all the way down to find her chosen experts, but only after four paragraphs and a photograph have been devoted to the story of Harry and Ruth Feather from Sheffield, whose son was born with a cleft lip which has been successfully repaired.
Joan Morris, national co-ordinator for Eurocat and director of the National Down Syndrome Cytogenetic Register, said some of the cleft lip and club foot abortions recorded on Eurocat could have had other problems such as heart defects.
But the number of abortions for Down’s syndrome foetuses was 886 in 2010 — almost double the 482 recorded officially, said Morris, professor of medical statistics at Queen Mary, University of London.
“Babies are aborted for Down’s and they still don’t put that on the abortion form, so if they can’t do it for Down’s, why would they put cleft lip? The Department of Health abortion data should not be published by congenital anomaly because it is incomplete and not accurate.”
Stuart Campbell, an obstetrician and a specialist in diagnosing cleft lip and club foot by ultrasound, said: “Club foot is treatable. To have 37 babies aborted in one year is an awful lot. This is horrific.”
Campbell, of Create Health clinic, added: “Most cleft lips are isolated and correctable. Some doctors probably want to hide it [the termination]; some are probably just too busy to record it properly … We should be given full data and these figures show that the official statistics are a disgrace.”
Cleft lip affects one in 700 births and operations usually take place in the first three to six months after birth. Club foot affects one in 1,000 babies and treatment also begins early, with plaster casts, splints and surgery if necessary.
I’ll come back to the issue of Down’s syndrome and Joan Morris’ comments on the Department of Health’s abortion figures shortly, as that raises some very different issues but for now I want to stick with the cleft lip issue and finish that off properly.
I should also note the Beezy tops off her article with a quote from Rev Joanna Jepson and a reference to Fiona Bruce (the MP, not the newsreader) having had a child with club foot that was successfully corrected with a quote that indicates that she [Bruce] intends to look into these figures – which is, of course, why we’re here now.
So out of five piece of ‘colour commentary’ on this story in Beezy’s article we’ve actually got only one genuinely informed opinion, that of Joan Morris, 3 lay opinions and a bunch of aimless hand-waving from Stuart Campbell who many may remember as the man with the ‘ooh, look at the wickle baby on my 4D ultrasound machine’ pictures from the last big abortion debate in 2008 – and if you don’t then feel free to remind yourself of what the Science and Technology Committee had to say about Campbell’s images in their 2007 report on abortion.
What you may also have noticed is that it was Campbell’s hand-waving comments that got top billing as Beezy’s unnamed leading obstetrician back in paragraphs 4 and 5 of the article rather than Morris’s comments on the possibility of multiple defects. However, allowing for the significant uncertainties that exist in the Eurocat data, we can still use it demonstrate the facile nature of Campbell’s observation that ‘most cleft lips are isolated and correctable’ because Eurocat’s figures put the overall prevalence of cleft lip at 10.2 cases per 10,000 live births, which is 1 in 980 births, of which 1.27 cases per 10,000 births (approx 1 in 7870) ended in an abortion, which means that most foetuses that were diagnosed with a cleft lip (85.9%) were carried to term and we still don’t know how many of the 12.8% that were aborted had other much more serious conditions on top of a cleft lip, although foetal deaths accounted for just 1.3% of all cases – and for club foot the corresponding figures were 82.4% carried to term, 2.5% foetal death and 15.1% abortion.
So, given the uncertainties about cases with multiple abnormalities, the Eurocat data is fully consistent with Campbell’s observation that most cleft lips are isolated and correctable, because that what the data shows is actually happening and, in fact, the Eurocat figures for the percentage of cases ending in abortion are pretty much in line with the American Academy of Otoloryngology’s estimate that up to 13% of cases of cleft lip present with other birth defects.
Now get to the altogether more serious matter of the issues raised by Joan Morris in regards to apparent discrepancies between the Eurocat data and the data provided by the Department of Health for abortions carried out under Ground E in it’s official abortion statistics, not least in regards to Down’s syndrome where Morris indicates that there were 886 Down’s Syndrome foetuses for which abortions were recorded in 2010 of which only 482 were registered under Ground E.
So, first thing first, the figure of 886 abortions of Down’s Syndrome foetuses is an estimate based on prevalence figures derived from the records of 260,000 births in England and Wales in 2010, which is around 36% of the total number of births recorded in England and Wales in that year.
So, not that I doubt Morris’s figures because I’ve worked with a few medical statisticians in my time and they’re a pretty diligent bunch of people. but the first thing to do is check her figures because these provide the key to calculating exactly how a big a discrepancy their might be between the Eurocat and DoH figures.
She gets 886, I get 877, so I’m slightly out which looks be down to a difference of around 7,300 births in figures we have for the total number of births in England and Wales for that year, but that’s perfectly fine. The Eurocat data states that it includes stillbirths in its figure, while mine are just for live births, which accounts for about half this discrepancy and the rest is, I suspect, nothing more than a reflection of differences in the datasets from which we’re taking our numbers. I get mine from the annual ONS birth statistics, which may well be based on birth registrations, while Eurocat probably uses hospital birth birth records, so a 0.5 difference or thereabouts in within the bounds of minor variations from different data sources and nothing at all to be concerned about.
So we’re good to go here and a bit footling around with numbers gives us a multiplier of 2.795 or thereabouts to get from the raw Eurocat numbers to an estimate of the total number of aborted foetuses for whom one or more congenital abnormalities was registered during that year, which bring us out at an estimate of 3,703 compared to 2,307 abortions carried out under Ground E in the abortion statistics.
So, we have a discrepancy of just shy of 1,400 abortions to account for and it is real discrepancy. In fact, a comparison of the Eurocat data with DoH statistics for Ground E abortions from 1991 to 2010 shows that, on average, around 40% of aborted foetuses that are found to have a congenital abnormality don’t show up in the abortion statistics as Ground E abortions.
So why is that happening?
Well you can already see from Beezy’s article the kind of ‘explanations’ that the anti-abortion lobby would like the public to swallow, all of which revolve the proposition that doctor and abortion clinics may be providing the Department of Health with accurate information in order to “spare the mother’s feelings” over their decision to abort a deformed foetus or avoid controversy over “weeding out ‘imperfect’ babies”. It’s even been suggested that some doctors/clinics are just too lazy to fill out the forms properly and, of course, the focus on data for conditions such as cleft lip and club is all intended to create the impression that at least part of this discrepancy in the figure may be a result of doctors concealing abortions carried out on foetuses with minor, easily corrected, abnormalities.
Right now, there is not a single shred of evidence to support any of these suggestions, all of which come primarily from people with links to, or who are fully paid members of, the anti-abortion lobby. Beezy’s ‘experts’ have an agenda, on that’s made patently transparent in this passage from the transcript of the sham inquiry’s second evidence session:
ROB FLELLO: Thanks. I’ve really enjoyed listening to your evidence. I just want to build on some of your answers, not least the very last one there, and also your observations around eugenics. Would you feel that, actually, there is almost a presumption with the tests that, if you’re having a test, the answer, depending on how negative, or hopefully not negative — but how negative the answer is, the result will therefore be abortion? And there’s almost a sort of built in — I think you said, hence the request to clarify your answer about eugenics, that we’re not quite there yet, but it’s a sort of tipping point. But, actually, is there not almost a built in assumption that the end of the path, depending on how negative, will be an abortion? And, therefore, actually, that is in a way a sort of systematised eugenics? Therefore, is not the answer, potentially oversimplifying your very detailed responses, that, actually, the presumption should be, here is a support package, and the depth and spread of that support package depends on how negative, if you like, the answer is?
DR FITZPATRICK: Yes, yes. Absolutely.
I think what I perhaps falsely, and please forgive me if I’m wrong about this — what I took from the question about eugenics was a programme, an intentional programme, a widespread programme, a widely accepted programme; and what I was saying, I think, was that individuals may have their own eugenic programme, if you will.
ROB FLELLO: Just, if I may, in terms of kind of almost a sort of a cultural programme?
DR FITZPATRICK: Sure.
ROB FLELLO: It might not be a system, but actually a cultural programme?
DR FITZPATRICK: You’re absolutely right, and part of the culture, if you will, that exists and may grow, which will take us to a very different place that I really don’t want to go to, depends on the view, as I said the mistaken view, that disability and impairment means disease, or is equated with disease. It also depends on what I think is a false view, but this is another discussion to have at some point, that disease should be eliminated, or that disease can be eliminated, and that disability should be eliminated from human experience and human life.
This goes on for about another half a page before Flello is satisfied that he’s got enough out of Fitzpatrick to warrant throwing the label ‘cultural eugenics’ in the final report to describe the individual decisions that women and families make about whether or not they feel they cope with raising a disabled child, heedless of the fact that its thoroughly disreputable and dishonest line of argument,but that only serves to emphasise even further what a complete and utter agenda-driven sham this ‘inquiry’ is.
But I digress, and we do have a discrepancy in the data to account for, one that in relation to Down’s Syndrome is actually slightly large than even the Eurocat data suggests.
The Eurocat figures are based on data collected for around 35-36% of pregnancies in England and Wales taken from regional registries, which obviously means that there are still a significant regions of the UK for which it doesn’t get any data, including London and the South East of England where its known that pre-natal screening rates for congenital and chromosomal abnormalities are somewhat higher than they are in other parts of the UK.
There is, however, also the National Down Syndrome Cytogenetic Register, which is based at the Wolfson Institute of Preventative Medicine and its coverage is far more comprehensive than Eurocat’s, in fact near enough 100% although it only focuses on chromosomal abnormalities, which means Down’s Syndrome (obviously) but also Edward’s syndrome and Patau syndrome. For 2010, it recorded 942 terminations of foetuses with Down’s Syndrome, of which London and the South East accounted for almost 400 and its records show that where women receive prenatal screening for Down’s Syndrome, just over 90% choose to have a termination while just 6% choose to carry the pregnancy to term – most babies that are born with Down’s Syndrome are born to women who are either not offered to choose not to take up an offer of prenatal screening.
So, now we’ve got an even bigger discrepancy in the figures to account for in respect to Down’s syndrome and, indeed, Edward’s and Patau Syndrome where the 2010 data from NDSCR shows 344 and 151 pregnancies ending in a termination compared to just 164 and 51, respectively, in the DoH Ground E data. That’s 740 terminations in total, which would cover more than half of the discrepancy between the Eurocat and Ground E figures.
Now before we delve any further, I should stress that there is no evidence whatsoever of any discrepancies in the figures for abortions carried out after 24 weeks gestation, when Ground E is the only option unless a woman’s life or health is at serious and imminent risk. The difference between the Eurocat and DoH figures is solely due to abortions which took place before 24 weeks gestation, when women had the option of seeking an abortion under either Ground E or Ground C, which cover risks to the physical or mental health of the woman greater that would be the case if the pregnancy were to continue to term. This is about what is being put on the abortion forms returned to the Department of Health, not about doctors performing illegal abortions after the 24 week limit.
Now, one key question we need to ask is that of exactly where and how Eurocat gets its data on diagnoses of congenital abnormalities. Well, much of it comes from hospital diagnoses and prenatal screening programmes, obviously, but if you look at its data collection forms what you’re also discover is that at least some of diagnostic data appears to come from pathology labs, which means the data is collected post-mortem. This, I strongly suspect, may help to explain at least part of the discrepancy between the Eurocat figures and the DoH abortion records because the Eurocat data may very well include post mortem diagnoses from foetuses that were aborted under Ground C without either the mother or the doctor who performed the abortion being aware of the presence of any foetal abnormalities prior to the termination taking place.
This, I think, only serves to emphasise the point I made earlier about the fact that we cannot read anything into the presence of seemingly minor, correctable, abnormalities in the Eurocat data as at least some of this data may have been collected post mortem for foetuses aborted, perfectly legally, under Ground C without, again, either the woman having the abortion or the medical staff involved in performing the abortion being aware of the abnormality prior to the procedure. And, in the event that anyone is wondering why these abnormalities weren’t picked up on the pre-abortion ultrasound scan, which is used to confirm the gestational age of the foetus, the answer would be (a) because the person performing the scan is not looking for abnormalities, so anything relatively minor is unlikely to be spotted, and (b) because even if an abnormality were spotted, it wouldn’t make the slightest difference to the reasons for which the woman was seeking an abortion anyway.
So, post mortem data may account for part of the discrepancy here but not, I think, for the significant differences in the figures for major chromosomal abnormalities such as Down’s Edwards and Patau syndrome, although it may still account for part of this discrepancy.
There, if the anti-abortion lobby is to be believed – *snort* – we could be looking at deliberate cover up by doctors who are fearful of a public controversy should the public become aware of the actual number of foetuses with these conditions that are being aborted.
Is that that really plausible? I doubt it very much.
For one thing, people will only, generally speaking, engage in a cover-up if they think they’ve got a very good chance of getting away with it and, in this case, that rather presupposes that the doctors who are allegedly fiddling the figures and putting false information on abortion forms returned to the Department of Health are entirely unaware of the existence of both Eurocat and the National Down Syndrome Cytogenic Register and the fact that both registers publish their data openly, enabling anyone who cares to look to quickly cross-reference their figures against the DoH abortion statistics.
So, either there are a number of really dumb doctors out there, performing abortions, because an easily exposed cover-up would be infinitely more damaging than just reporting the actual figures, or we’re looking at a bullshit allegation from people with a vested interest in trying to manufacture a controversy in the hope that it will sway public opinion toward their agenda.
Then we have to take into account that the very idea that the actual figures for abortions of foetuses with serious chromosomal abnormalities might prove to be controversial relies on the assumption that public sympathies will lie with the foetus rather than with the women/families who chose to have an abortion.
Now, because public attitudes towards Down’s syndrome have changed considerable over the last 30 year or so, one could easily imagine that many people would be shocked by the news that over 90% of foetuses diagnosed, prenatally, with Down’s syndrome are aborted. But we also see much the same level of discrepancy in the figures for Edward’s syndrome and Patau syndrome, in fact for Patau syndrome, only 1 in 3 abortions recorded by NDSCR appeared in the DoH figures under Ground E.
That present a bit of problem for the ‘cover-up’ argument because while many of those born with Down’s Syndrome do go on to live healthy, happy lives and, indeed, life expectancy amongst people with Down’s syndrome has increased significantly in recent years albeit at a cost because there appears to be an increased risk of Alzheimer’s associated with Down’s, the same argument cannot be made for either Edward’s or Patau Syndrome.
Out it this way, of those babies that are born with Edward’s syndrome, half do not survive beyond the first week of life and the median survival period for Edward’s syndrome is between 5 and 15 days. Only 8% survive to one year and just 1% to 10 years of age, if they’re lucky enough to have the less severe mosaic form of Edward’s syndrome.
As for the range of abnormalities observed in Edward’s syndrome (info from Wikpedia), these can include; kidney malformations; structural heart defects at birth, intestines protruding outside the body, esophageal atresia, mental retardation, developmental delays, growth deficiency, feeding difficulties, breathing difficulties, small head (microcephaly) accompanied by a prominent back portion of the head, low-set, malformed ears, abnormally small jaw, cleft lip/cleft palate, upturned nose, narrow eyelid folds, widely spaced eyes, drooping of the upper eyelids, a short breast bone, clenched hands, choroid plexus cysts, underdeveloped thumbs and or nails, absent radius, webbing of the second and third toes, clubfoot or Rocker bottom feet and, in males, undescended testicles.
As for Patau syndrome, well again we’re looking at an extensive list of debilitating abnormalities affecting the head, brain, limbs, genitalia, kidneys and heart and an 80% mortality rate in the first year of life for those children who are born with this condition, and I should add that were it not for the number of terminations, most foetuses with Edward’s and Patau syndrome would die in the womb anyway.
The idea that doctors might conceal the extent to which a diagnosis of Down’s syndrome leads to a termination for fear of wandering into a public controversy might have a degree of superficial plausibility but the same cannot be said for Edward’s syndrome or Patau syndrome, where we see the same patterns of apparent under-reporting, and that rather suggests that the idea that doctors may be engaging in a deliberate cover-up is a complete nonsense.
So, could it be, instead, that doctors are booking abortions in under Ground C rather than Ground E to spare the feelings of at least some of the women who choose to terminate a foetus with a serious disability?
Spare their feelings from whom, exactly?
Not from themselves, surely, because they know perfectly well why they chosen to have an abortion.
From the Department of Health, who are sent records of every abortion? Why would would women care about the opinions of the bureaucrats and statisticians who collate this information?
Maybe these women don’t want a Ground E abortion to appear on their medical records in case their GP sees them?
It’s possible, but I can’t see really see many doctor’s buying into that argument, not least because obstetricians should be keenly aware of the importance of accurately recording congenital abnormalities diagnosed in pregnancy because of the possibility that abnormalities might arise in future pregnancies indicating the possibility of an underlying genetic cause.
Sorry, but the idea that doctors are deliberately placing misleading information on abortion forms returned to the Department of Health just aren’t plausible, not in the number that would be necessarily to account for the scale of the discrepancies observed in the data.
So, after eliminating the impossible, or ta least highly implausible, what have we got left?
Well, there are still a couple of possibilities that cannot be taken off the table once you understand that, for Down’s syndrome, a little over 85% of terminations take place before 21 weeks gestation and half of these take place before 15 weeks gestation because an increase proportion of diagnoses are now being made during the first trimester – for women under 35 it’s currently 57.6%, while for women over 35 it’s 68.5%.
Older women (over 35) account for around 65% of prenatal diagnoses of Down’s syndrome and are also more likely to use a private sector abortion clinic than either an NHS hospital or NHS-funded Independent Sector provider (8%, compared to 4% at age 20-35 and 1% in women under 20) so one of the first questions I’d be asking here is how many of the abortions for Down’s Syndrome recorded on Eurocat and NDSCR took place in the same hospital where the prenatal screening and diagnosis took place because it is entirely possible that some women, having been given the news that their foetus has Down’s syndrome – or any other congenital abnormality for that matter – mat choose to approach an independent or private sector provider for an abortion under Ground C, without disclosing the fact that their foetus has a diagnosed abnormality. In that case, what we have are abortion records completed by doctors and clinics, in good faith, based on information provided by the women seeking the abortion which nevertheless fails to record an abortion for reasons of congenital abnormality and this discrepancy will only be picked up by congenital abnormality registers, such as Eurocat and NDSCR, when they cross reference the diagnostic records supplied by hospitals with data from other sources, such as pathology labs and, of course, the abortion records supplied to the Department of Health by hospitals and clinics.
The Department of Health, on the other hand, will not pick up on any discrepancies because the only thing it is concerned with recording are the legal grounds for abortion stated on the abortion forms and not the diagnostic data supplied to Eurocat and NDSCR, which it doesn’t need to fulfil its purpose of recording the legal grounds under which abortions are carried out.
There are quite clearly a range of possible explanations for these discrepancies, most of which don’t rely on the anti-abortion lobby’s wholly unevidenced and deliberately pejorative presumption that doctors are deliberately fiddling the figures by supplying inaccurate and misleading information to the Department of Health.
As I such , I have to agree with Joan Morris that the Department of Health should not provide a breakdown of Ground E abortions by congenital abnormality, at least not until the reasons for these discrepancies have been thoroughly investigated and identified, putting us in a position where we can clearly understand why there are such marked differences in the figures.
Personally, I’d go a little further than that and invite Morris to put together a research team to carry out both a retrospective analysis of existing data and a longitudinal study of current practice, as she seems eminently qualified to take on such a role, with – of course – generous funding from the Department of Health and a requirement that team’s findings should be published, subject to peer review, in one or more appropriate medical journals with the proviso than any publication should be made on an open access basis.
I think those are perfectly reasonable conditions in the circumstances as I cannot see why a study of this kind, and potential importance, should not attract the interest of the very best journals and easily find its way into the likes of The Lancet, British Medical Journal or the New England Journal of Medicine as I rather suspect that close examination of similar data in other countries across Europe and, indeed, around the world may very well reveal similar discrepancies between information recorded for the purpose of legal compliance with local abortion laws and data recorded by clinical registries involved in tracking epidemiological information about the prevalence of congenital abnormalities.
What, however, should be abundantly clear is that an agenda-driven sham inquiry working with ‘evidence’ supplied by a journalist whose grasp of statistics is somewhere between rudimentary and non-existent is no more likely to provide us with any genuine insights into these than Nadine Dorries is likely to make contribution to the ongoing development of M-string theory.
And with that I call it a wrap for now, although I expect that I will be back in the not too distant future to heap some much deserved scorn on Rob Flello’s ‘cultural eugenics’ bullshit even if, for now, I confine my response to invoking Godwin’s law in advance of the inevitable piss-poor Nazi analogy’s that will follow in its wake.
Oh, sorry, before I forget… whenever Beezy Marsh crops up in dispatches someone always raises a query about the origin of the name ‘Beezy’ and the short answer to that question is, no I have no idea either. What I can say is that it’s recorded at Companies House as her middle name and her actual first name in Louise, so ‘Beezy’ may very well have originated as one of those childhood nicknames that some kids acquire as a result of a either bit of adult silliness or from their own, or a siblings, ‘cute’ inability to say the name Louise properly, which she then adopted as a middle name on starting out as a journalist.
The only other alternative derivations I’ve been able to find come from Black American urban street culture, where ‘beezy’ is an alternative term for a ‘bitch’ as in the sentence ‘you stupid ass beezy… get out my face hoe!!!’ (don’t blame me, I got that from the online urban dictionary) or as a diminutive form of the name ‘Beelzebub’, the literal meaning of which is ‘Lord of the Flies’. I doubt very much that the hip-hop connection will fly but I must admit that I’m rather drawn to the possibility of the Daily Mail having employed a journalist named ‘Beelzebub’. Although I’m also pretty certain that that’s not where the name comes from either, unless one of her parent’s is a major fan of William Golding, it does have a nice and very apt ring to it.
And so, to quote the great and powerful Porky Pig – Th-th-th-that’s all folks.