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On terminations and survival rates

Posted in Scientific research, Termination by Matt at WelcometoIllinois on January 24, 2010

I recently wrote about the theory that an increase in the quality of care and medication had contributed to the increased number of children born with Down’s syndrome in the US and UK (along with higher maternal age of course).

A recent study of survival rates of children with congenital abnormalities backs that up. According to a Medscape report based on a story in the Lancet, “medical advances from 1985 through 2003… increased in the likelihood of survival.”

While that seems pretty straightforward another finding of the study has me perplexed.

“Pregnancy termination played a significant role in boosting survival rates. ‘The proportion of terminations of pregnancy for fetal anomaly increased throughout the study period (from 12.4% in 1985 to 18.3% in 2003) and, together with year of birth, was an independent predictor of increased survival,’ the authors write.”

Now I can fully understand how increased terminations of babies with congenital abnormalities would have an impact on the overall infant mortality rate but are the researchers, or the reporter, seriously suggesting that there is a causal relationship between increased terminations and increased survival rates?

The statement “pregnancy termination played a significant role in boosting survival rates” suggests so. As does the headline: “Treatment Advances, Early Terminations Contribute to Higher Survival Rates in Children With Congenital Anomalies”.

I’ve been racking my brains trying to work out how increased terminations could lead to the babies that are born with congenital abnormalities being more likely to live longer, but I can’t see it. Without access to the Lancet report it is hard to tell whether the original research supports the Medscape headline, but my guess is that Medscape has taken a statement that was true for the general population and applied it specifically to the population of children with congenital abnormalities.

US groups are in denial over Down’s syndrome testing

Posted in Diagnostic testing, Statistics, Termination by Matt at WelcometoIllinois on June 30, 2009

I’ll be honest and state that when I first read Leticia Velasquez’s appeal for truth about prenatal testing as it relates to Down’s syndrome I wasn’t entirely sympathetic. I have subsequently changed my mind.

“They denied the 90% abortion rate of DS children and that prenatal testing and genetic counseling were done to seek and destroy our precious children with DS,” she wrote of the document drawn up by five groups – the National Down Syndrome Society (NDSS), National Down Syndrome Congress (NDSC), American College of Obstetricians and Gynecologists (ACOG), American College of Medical Genetics (ACMG), and National Society of Genetic Counselors (NSGC) – in an attempt to reach a consensus about issues about, and perceptions of, prenatal testing as it relates to Down’s syndrome in the context of the Prenatally Diagnosed Condtions Awareness Act and the need to improve information given to parents expecting children with Down’s syndrome.

My initial reaction was that perhaps statistics about abortion rates had no place in information for would-be parents anyway – you can’t guilt-trip someone into choosing to keep a child with disability (or at least you shouldn’t).

However, I then read the document (Pdf) itself and immediately changed my opinion to be supportive of Leticia’s position.

The document is not designed to provide information to would-be parents but to effectively lay out some ground rules for the discussion of prenatal testing. It appears to be an attempt to be as politically neutral as possible on issues related to abortion and disability – which is to be applauded I think. However, the groups appear to have gone so far in attempting to be neutral that they are actually in denial about some issues what most people would hold to be self-evident.

Among the six ‘misconceptions’ are:

  • Misperception 1: Obstetricians recommend prenatal tests to reduce the number of individuals in society who have birth defects and genetic conditions.
  • That may not be the primary reason for doctors recommending prenatal tests, but it is the primary driver behind the existence of prenatal testing programmes. As previously discussed in relation to testing programmes in Europe and Australia. As Dominic Lawson wrote of the UK’s programme: it is “hugely expensive, justifiable on cost-benefit grounds purely on the basis that it will detect and destroy children who would otherwise cost the Health Service much more as survivors”.

  • Misperception 3: Ninety percent of pregnancies prenatally diagnosed with Down syndrome are terminated.
  • The consensus statement argues that “Several studies reporting older data, studies from single centers, and studies from other countries have reflected variation in the number of pregnancies terminated.” Yes, there are geographic variations, but if there is a study that shows any figure substantially lower than 90% I don’t remember seeing it.

    Human rights and inhumane wrongs

    Posted in Attitudes to disability, Ethics, Termination by Matt at WelcometoIllinois on January 7, 2009

    Every child has the right to be born healthy but do unhealthy children have a right to be born?

    That is the question raised by this news story on NDTV.com that covers the claim by B Subhashan Reddy, Human Rights Commission chairperson in the Indian state of Andhra Pradesh, that it is time for a legislation to prosecute parents for knowingly giving birth to an unhealthy child:

    “If either or both parents are HIV positive, or have communicable diseases like TB or leprosy or genes related to Down’s Syndrome, dyslexia, they should not produce a child. Even muscular dystrophy, why should they produce an unhealthy child?”

    You can watch a video of the news report here.

    While Reddy does not state directly that parents of potentially unhealthy children be required to terminate the pregnancy the inference is clear – as is the suggestion that when it comes to human rights, unhealthy babies do not necessarily qualify.

    The report includes responses from those that believe that “neither the government nor any law can decide if a child should be born or not”.

    A different perspective – continued

    Posted in Attitudes to disability, Religion (and the lack of it), Termination by Matt at WelcometoIllinois on October 14, 2008

    When I decided to write about the (for want of a better phrase) anti-Down’s syndrome stance taken by a number of writers I was wary about how well my attempts at understanding a different point of view would be received.

    It has been interesting to see the response. There has certainly been a lot of interest, with A different perspective quickly becoming the third most popular post on this blog. Only posts about Tropic Thunder and Sarah Palin have garnered more interest.

    I have also been pleased to see one of the writers concerned, The Aesthetic Capitalist (AC) prepared to engage in considered debate on the topic, although not because I necessarily want to provide an audience to some of his views.

    AC has responded to my post and the question I raised as to why he wanted to “end Down Syndrome.”

    Given the level of interest in my original post I thought some people would be interested in my response to his response, which I just left as a comment on his blog. While I don’t particularly want this blog to be the forum for the continuation of this debate, which is best left to the comments sections I think, this is all I want to say on the subject for now:

    AC,

    You quote from a parent of a child with Down’s syndrome to support your view that it brings sacrifice and suffering, rather than joy. I don’t doubt that this perspective is real and that there are huge challenges to be faced.

    However, you are ignoring all the countless accounts of parents of children with Down’s syndrome about the joy and happiness they get from their children. Are you going to ignore these accounts just because they come from people with beliefs that are different from your own?

    I understand your issues with the deification of disability but your assumption that religiously motivated suffering is the main reason for people choosing to have a child with Down’s syndrome is, I believe, wrong.

    I previously wrote that I see two reasons why a great number of “Down’s syndrome bloggers” are religious:

    “1/ That religion and faith play a big part in many people’s decision to continue with a pregnancy after they have discovered that the baby has Down’s syndrome.

    2/ That a lot of people draw comfort and strength from their religion in accepting and coping with the issues that arise from bringing up a child with disabilities.”

    That does not mean that they are choosing suffering over joy, but it may mean that they choose religious imagery as a means to express their joy. Without knowing for sure, we cannot assume to know what their motivations are.

    I have already explained that my own decision was not motivated by belief. Although I don’t spend a lot of time thinking about it, I consider myself to be pro-choice. As I wrote the other day:

    “I would respect the right of someone to continue with their pregnancy on religious (or any other) grounds just as I would respect the right of someone to terminate their pregnancy on philosophical (or any other) grounds.”

    Not continuing with our pregnancy was, therefore, a very real option for us. What we found, however, was that when theory became reality, Down’s syndrome was not, in itself, enough to justify terminating the life of our unborn child.

    One of the reasons for this was the consideration of all the disabilities that a baby could be born with that you cannot scan for. What would we do if our baby was born deaf or blind? We’d just get on with it.

    I can honestly say that at no point in the decision-making process did I consider just “trying again”. Bringing a child into the world is not like making something with clay to be reprocessed when it doesn’t quite turn out like you wanted.

    I also never considered that we might be “depriving a healthy child” of life. The choice I made was whether to continue with the life of my child (not in theory, but in the specific circumstances in which the decision had to be made). There was no other child to consider. I suspect that this is a point of view on which we are unlikely to reach agreement.

    While I understand your perspective as to why you personally would not want to continue with the pregnancy of an unborn child with Down’s syndrome after an ante-natal diagnosis I am still not clear on why you feel the need to convince others to do the same.

    You appear to take a dim view of religiously motivated pro-lifers who seek to reduce the right of the individual to choose termination.

    In my view your desire to persuade people to view knowingly carrying a Down’s Syndrome fetus to term as “monstrous” is just as bad – if not worse given that it is actively discriminatory.

    At the moment Down’s syndrome is one of the few disabilities that can be tested in the womb, so it is naturally the focus of discrimination.

    What happens when it is possible to test for intelligence, or sight, or hearing? Would you also seek to “end visual impairment”? Where do you draw the line?

    I guess my point is this: every body draws a line somewhere, but where they draw that line is a personal matter for the individual (or more likely couple) to decide. They are free to base that decision on whatever they choose and neither you, nor anyone else, should dictate to people what that decision should be.

    David Cameron on disability, termination and parental choice

    Posted in Politics, Statistics, Termination by Matt at WelcometoIllinois on August 17, 2008

    Conservative party leader David Cameron has an annoying habit of saying things that I agree with, this time on the issue of parents’ right to choose to terminate the pregnancy of a disabled child.

    Cameron, whose son has cerebral palsy, declined an invitation to voice his support for ‘reversing the discrimination’ against unborn children who are disabled at a public event, according to this report in the Daily Mail.

    Cameron has supported attempts to reduce the abortion limit for healthy babies to 20 weeks from the current 24 but evidently feels that when it comes to disability potential parents should retain the rights to choose beyond 24 weeks.

    “I am speaking as someone, I mean, I’ve got a six-year-old boy who is severely disabled, has cerebral palsy and is quadriplegic and he’s a sweet boy, he’s a lovely boy,” the Mail quotes him as saying.

    “It is though incredibly tough bringing up disabled children and I don’t want to kind of put myself in the position of saying to other parents you’ve got to go ahead and have that child or you can’t have an abortion or you can do this or you can’t do that.”

    The current law in Britain permit abortions up to 39 weeks if tests show the baby is likely to be seriously handicapped. It does not, however, define what is considered a “serious” disability and late abortions have reportedly been performed for club foot or cleft palate.

    Although this lack of definition is troubling, I agree with David Cameron’s position on this. As I previously stated: “After a lot of thought we decided to continue with our pregnancy but we very nearly didn’t and I would respect the rights of anyone to make their own decision given their individual circumstances. It was the right decision for us, but that doesn’t make it the right decision full stop.”

    The Daily Mail’s report also contains some stats related to abortion rates in the UK:

    “Last year, there were more than 200,000 abortions in England and Wales, up from 175,000 in 2002.

    More than 95 per cent are carried out for so-called ‘social’ reasons.

    Some 2,000 abortions a year are on grounds of disability. Of these, more than 100 are performed after 24 weeks.

    In one region, the South West, 117 babies with club feet, cleft palates, or webbed or extra fingers and toes were aborted between 2002 and 2005.

    Across the country, more than 400 pregnancies a year are terminated because of Down’s syndrome.”