The Politics of Pre-Natal Screening

I have intentionally avoided much comment on the US election. Trying to be a good neighbour and all. After all, it's really not my business (other than as an affected observer) and it's all too divisive anyway.

Until today, that is. My attention grabbed by the headline, "U.K. Mother Murders Daughter Because "Embarrassed" by Disability", I really didn't expect to find much more than the usual macabre story of a parent unable to "cope" with their child's disabilities. Takes all kinds to make the world go around, as they say. Too bad it's the innocent children who pay the price.

I certainly didn't expect this particular political spin.

This trial, which is still in progress, comes during a week in which the devaluation of children with disabilities has been very much in the media spotlight, thanks largely to Gov. Sarah Palin's much publicized decision to carry to term her son Trig, who has Down's syndrome.

Prominent bioethicist Wesley Smith recently commented on the media bias against Palin, and says it occurs in part because, "Palin is viewed as 'the other,' symbolized by her and Todd's (Palin's husband) loving acceptance of Trig."

Smith said he hopes that the unconditional love the Palin's show to their son Trig will be an example for a world that is evermore justifying murder of the innocent.

"I hope that people will decide to emulate the Palins in their unconditional acceptance and love for their beautiful son, Trig," said Smith.

Well, gee, I hope so, too. But, I'm still not sure I see the connection. Fortunately, Patricia E. Bauer's blog makes it a little clearer:

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome.

From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

Things that make you go Hmmm. Is it possible ... could it at all be related to this?

Yes. Yes, it could. And it goes something like this. Last year, the Society of Obstetricians and Gynaecologists of Canada and the Board of the Canadian College of Medical Geneticists issued a recommendation that all pregnant women be offered screening for Down syndrome. Sounds good, right? Until you consider the fact that statistics point to over 90 per cent of pregnancies diagnosed with Down syndrome being terminated.

Which leads to the question of just what exactly parents whose pre-natal screening show that their child will have Downs Syndrome are being told. And perhaps more importantly, what aren't they being told?

It's one thing to say that "It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies". But it's completely another matter to ask how informed and real that choice really was.

I must confess that when I was first put on to this issue earlier this year by the Nova Scotia Down Syndrome Society, I had trouble seeing a real issue. Until I stopped to actually think about exactly what type of information was being provided to parents as part of this screening service.

It's no real secret that doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. In fact, it's this very situation which has led to the Canadian Down Syndrome Society challenging the ethical implications of the recommendations by the obstetricians’ group. And to the currently circulating Petition for a Prenatal Diagnosed Condition Awareness Act. A Petition I have wrote more extensively about here.

Now let me make two things clear here.

First of all, unlike some of the commentors here, I don't believe that this is an issue of 'socialized medicine'. No matter how fun and easy it is for our American friends to go there in a hurry. After all, the best defence is a good offence, as they say. But that would likely serve as better fodder for another blog post.

No, I see this is an issue facing many different countries with different health care systems today. And I think these doctors are, for the most part, motivated by what they feel is 'doing the right thing'. Not so much for the sake of the health care system or the the cost to society, but for the parents.

The poor, poor parents.

Remember, it wasn't that many years ago when (nearly) all challenged children (be it physically or mentally) were placed in institutions immediately at birth. As societal values slowly change and technology rapidly advances, many (including the medical professionals) are left scrambling to play catch up. Some, perhaps, at a quicker pace than others.

Secondly, I am not for one minute advocating that every woman pregnant with a child with Down syndrome, or any other disability for that matter, should be or is obliged to carry that child to term. We all need to remember that as a society we have a hell of a long way to go in providing proper support and services for individuals with disabilities and their families. It is not an easy row to hoe, not always an easy life to live. And yet many, many will share you with the positive ways their child has impacted not just their life, not just their family's life but the lives of all those they touch.

But here's the thing ... if we believe in a right to "choose", if we are ever going to give more than lip service to that concept, we must never forget that the key word is choice. As in making that extra effort to ensure that the choices are promoted in a fair and valid manner. Which means giving giving people all the information they need to such a life-altering choice.

But getting back to Sara Palin, in the words of Krista Flint, executive director of the Canadian Down Syndrome Association:

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

So love her or hate her (and God knows there's enough of both swirling around the blogosphere), you have to give Ms. Palin credit where it's due ... she might just be bringing into light an issue that has for too long been in the shadows. And that, no matter what your political persuasion, has to be a good thing.

As an aside, it's interesting to note that Dr. Lalonde has apparently attempted to clarify his previous remarks. According to the L.A. Times,

Doctor Lalonde's point of view should not have been portrayed as a concern that the number of abortions would decline but rather, as expressed in the Globe and Mail, that women would be influenced by Gov. Palin's decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.

Which is a good thing, I suppose. Particularly when you consider that one of the principal precepts taught all physicians is "First Do No Harm".

Update: Just in case anyone continues to labour under the false belief that this is a 'socialized medicine' issue. It could just be that Canadian doctors are being more up-front about it, is all.