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Posts Tagged ‘Down’s syndrome’

There have been various reports recently about a new test for Down’s syndrome that could be offered to pregnant women by the NHS within a few months. Unlike the tests used at present (amniocentesis and chorionic villus sampling), the new techniques are non-invasive and low risk; they work by analysing DNA from the foetus in the mother’s blood. The company Sequenom has already introduced such tests in the United States. [See, for example, Mark Henderson’s report in The Times, 29 Oct 2011, p3]

In itself, there is nothing morally wrong with pre-natal diagnostic testing, and it can bring a number of benefits. It can help parents to come to terms with a child’s disabilities early on; to prepare (psychologically and practically) for the birth of their child; and in some cases it can alert parents and doctors to the medical support and intervention that might be needed after the birth, and even before it. So there can be good reasons for parents to choose to have different kinds of pre-natal tests.

But the reality is that in most cases (about 90%), a diagnosis of Down’s syndrome in pregnancy becomes not a means to support the unborn child but a reason to abort it. So anyone with a concern for the unborn child, and anyone aware of the various psychological and social pressures on parents to choose to abort their Down’s syndrome child, might feel justifiable unease and even alarm at the advent of this new test. It’s not to be anti-science or anti-progress; it’s to recognise that some scientific advances can bring more harm than good when they are used without moral discrimination.

The reality is that eugenic screening and termination has become an accepted and largely unquestioned part of the British moral landscape, ever since disability became one of the grounds for abortion. It’s one example of how a change in law doesn’t just reflect the mores of a culture, but it actually helps to reshape them. It is now socially acceptable in Britain to think and say that people with Down’s syndrome have no right to be born, and consequently no right to live, simply on the grounds of their disability. (Eugenics: ‘the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics’; Oxford Dictionaries.) The intention of the parents or of the medical establishment may not be strictly eugenic (there are many complicated reasons why parents make these choices); but the background assumptions of a culture which is at ease with selective abortion on the grounds of disability are surely eugenic, in that such a culture has already decided that a certain category of human beings does not have the same dignity or rights as others, and that their exclusion will not harm the common good.

Isn’t it strange that this unacknowledged acceptance of eugenics sits side by side with an increasing social abhorrence of any form of prejudice against disabled people. In the same month that this test was publicised in the British media, which will allow more efficient screening for Down’s syndrome and probably lead to further abortions, Ricky Gervais is vilified for using the word ‘mong’ as a term of abuse, because of its associations (via ‘mongoloid’) with people with Down’s syndrome. (See Joe Public’s Guardian blog here.)

In 2001 the Disability Rights Commission was brave enough to put into words the very obvious link between the disability clauses of the 1967 Abortion Act and public prejudice against disabled people (much to the annoyance of Polly Toynbee):

The Section [1(1)d] is offensive to many people; it reinforces negative stereotypes of disability and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally.

In common with a wide range of disability and other organisations, the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally.

Here are Betsy Hart’s thoughtful comments on the testing issue [people in the US prefer ‘Down syndrome’ to ‘Down’s syndrome’; see the explanation here]:

The vast majority of instances of Down syndrome occur in babies carried by women 35 and younger, but that age group has historically been less likely to get tested. Now a simple and accurate blood test for this condition can be safely and routinely administered to virtually anyone who wants it as long as a doctor authorizes it.

So for the math: If more than 90 percent of women who find out they are pregnant with a baby with Down syndrome abort, does this mean we might eventually have almost no babies born with Down syndrome? Will we have gotten rid of a supposedly “undesired” human condition by getting rid of the people themselves who carry it?

And what does that do to the rest of us? I am the first to admit that I’m not signed up on any “adopt a baby with Down syndrome” list. I also didn’t sign up on the “raising four children on my own” list. We never know what challenges life is going to present. Accordingly, what a false sense of security a “no Down syndrome” test result can give parents.

Sure, the new test is just a tool, after all. If used to prepare expectant parents for a baby with Down syndrome so they can learn about the condition before their little one enters the world, great. Maybe they can be assured that life expectancies and outcomes for children with Down syndrome are so much better now.

Early intervention for cognitive development and surgical and other treatments for physical impairments have fundamentally and positively changed the playing field for babies born with Down syndrome today.

But how many minds will change when they have this information? We live in a supposedly humane and tolerant age. I question that. Not when we apparently still have so little tolerance for humanity that might be a little different.

I don’t doubt (and I know from the experience of parents themselves) what a huge shock and a huge challenge it can be when parents discover that their unborn child might have a disability. That’s one reason why it’s so heartening to read various personal stories that have come into the media in the light of the publicity about these new tests; above all from parents who might not have been particularly pro-life, but have had a kind of conversion through learning to love and value their disabled children in ways they never imagined would have been possible at first. Bonnie Rochman reports:

For Amy Julia Becker, who has written a book about life with her daughter, Penny, who has Down syndrome, coming to terms with her daughter’s intellectual limitations has taken time. “I went to Princeton, I graduated Phi Beta Kappa, I have always been smart,” she says. “I didn’t realize how much I assumed I’d have a daughter just like me. Having Penny really challenged me to rethink what it means to be a whole and full human being.”

In her book, A Good and Perfect Gift, Becker transcribes a journal entry written soon after Penny was born: “Can she live a full life without without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”

But many expectant parents don’t feel that way. Up to 90% of women who know in advance of a Down syndrome diagnosis choose to end the pregnancy, according to the few studies that have tracked this. The new test is not being marketed only to women who would end a Down syndrome pregnancy, say advocates of testing. Mothers who plan to have the baby may also want to know ahead of time in order to prepare emotionally and medically; half of infants with Down syndrome, for example, are born with heart defects. “I don’t think it’s all search-and-destroy,” says Canick. “That is an awful way of looking at this.”

But parents of children with Down syndrome are skeptical of the intent of early screening. “There is a real disconnect between hospitals, administrators and OB/GYN doctors’ understanding of what has changed for children with Down syndrome over the years,” says Howard, whose daughter, Lydia, starts conversations with strangers and cracks jokes in her inclusive preschool. “There was encouragement to get screened with the understanding that I would terminate because that’s what most people do.”

It’s true that mothers who learn soon after delivery that their babies have Down syndrome describe being overwhelmed with sorrow and disbelief on what they’d presumed would a joyous day. Howard cried every day for nine months after Lydia was born. Perkins McLaughlin says it took her eight hours after her C-section to muster the nerve to go visit her daughter, Gracie, in the neonatal intensive care unit. “There are people out there who feel the test is great,” says Perkins McLaughlin. “In some ways, it is great. But it is scary too. Will more people terminate because it’s earlier in the pregnancy and why not just try again? I don’t know what I would have done if I had found out at 10 weeks.”

Gracie is now 3 1/2. In the two years since Perkins McLaughin, now 44, has served as a parent mentor for the Massachusetts Down Syndrome Congress, she’s told the dozen or so conflicted pregnant women who have contacted her that Gracie is bright: she started signing at six months and had accumulated 100 signs by age 2, prompting her grandmother to ask, Are you sure she has Down syndrome? She loves music, dancing and her older brother and sister. Perkins McLaughin tells them how Gracie has added perspective to her life, softening her Type-A edges. “She’s not going to do quantum physics, but I don’t do quantum physics,” says Perkins McLaughin. “Gracie has showed me in a profound way that I am not in control of everything. I have a bumper sticker that says, Grace Happens.”

I wonder if serious reflection on ‘disablist’ prejudices and disability rights in this country will eventually lead us to reconsider the inherently eugenic abortion laws we have at present.

For more information about Down’s syndrome, see the Down’s Syndrome Association website here.

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