An editorial in the Ottawa Citizen today on prenatal testing:
Consider how prenatal testing has affected the Down syndrome community. It used to be that only the fetuses of women over 35 were tested for the extra chromosome that causes the condition. Now, in some jurisdictions, women of all ages are tested, and 90 per cent of fetuses with the defect are aborted. Whether you believe this is good or bad, there’s no denying that it’s significant.
I just returned from listening to Barbara Farlow talk at an Action Life meeting about her daughter Annie, diagnosed in the womb with a genetic problem, Trisomy 13. Annie lived for 80 days, and then died under suspicious circumstances in hospital. Barbara (in her quiet, steadfast, unemotional manner) explained she is concerned about the doctors–who see in a disabled patient dollar signs and bed spaces where a person with a better chance of living, or a higher quality of life–could be. In some cases, these doctors would prefer you terminate and where they don’t–a callous attitude has evolved in the health care system at large. Why help someone who is weaker at the expense of someone who is stronger? When our health care system won’t allow for both.
Prenatal testing–it’s neither good nor bad–in and of itself. How we use it most certainly is. I hear stories of doctors pushing for testing where patients don’t want it, and I wonder how often this happens. Or, how often a patient feels pressure to terminate because the baby *may* not be perfect. (These tests are often wrong.)
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Rebecca adds: The key, in my opinion, is informed choice, rather an informed consent. The implication of the phrase “informed consent” is “we will explain everything about the test to you, and then you will agree to it.” Implicit in true consent is that you can choose to withhold your consent. We need to explain to all healthcare consumers that they can refuse any test or treatment. Of course, when it’s your child’s wellbeing on the line, it’s especially easy to be browbeaten by medical personnel.
Quite apart from the very real issue of false positives (and, for some tests, false negatives) it should be made much more clear that testing for genetic conditions does nothing to improve outcomes, will not change whether your baby does or does not have a given disorder, and can cause more stress that it’s worth. While I believe non-invasive testing for issues with a higher than average probability it worthwhile, one could certainly make the case that, if you would not abort under any circumstances, these tests are best declined.
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Tanya comments: A friend of mine recently said to me, “I am better off getting pregnant soon, rather than waiting another year, because when I’m 35, the doctors will make me have an amniocentesis.”
Culturally, we actually expect to be pushed into things we don’t want to do (when it comes to all that lies under the umbrella of healthcare, that is).
For the record, I did remind her that no one can make her get an amnio, that they are in and of themselves risky, and that their accuaracy is questionable.
by 
90% of Down Syndrome babies are aborted. That means about 100% of liberals and 80% of “conservatives” secretly want to keep this sort of baby-killing legal, “just in case.”
Could this explain the vile hatred of Sarah Palin from all sides?
I have a few comments. Thanks again, for attending my talk Andrea!!
This month the CMAJ included an article on prenatal screening and the potential risk to physicians of a wrongful birth law suit if they do NOT offer screening.
The vast majority of mothers choose to terminate when something is wrong (and surprisingly, in Ontario, only 16% of these defects are genitally related) Knowing that the mother will likely choose to terminate, it must be difficult for a counsellor to provide a positive side to the condition because it would only increase the mother’s sorrow and distress after termination.
When you put these facts together, we have a system that is definitely heavily biased toward termination.
I once saw a study that determined that the total cost of doing genetic screening and testing on the required number of pregnant women, to find and terminate the one with down syndrome is approx $35,000. Yet the cost of that child, in terms of medical and social (education etc) costs, over its life time is roughly $500,000.
As they say, money talks. At a time of an impending health care crisis, there are MAJOR savings to be had in the detection and termination business.
It is fine to talk informed consent and informed choice etc etc, but it is important to understand the whole system and what drives it in order to get a real handle and a real solution on the problem.
With future tests for even more conditions looming, it IS a problem. A BIG problem.
I take a woman’s studies class that deals with reproduction, and the girls in the class with me (including my professor) are quite pro-abortion (or “woman’s choice”. However, I have found they do not see prenatal testing or abortion of defective babies as nessessary but rather an exploitation of women and those with disabilities, aswell as they recognize that doctors do infact pressure women into abortion when there are problems found with the baby. But, appart from this recognition, there was no concrete way that they had decided to deal with the problem (after all it is still the mother’s “choice”).
In line with post, I want to share a link to my blogpost regarding a document produced by the Bioethics committee at Ste-Justine hospital in Montreal. It’s on the subject of third trimester abortions for fetal anomaly:
http://bluewavecanada.blogspot.com/2008/11/hospital-document-sheds-light-on-3rd.html
Rebecca’s distinction between informed consent and informed choice is an important one. The following was published in 1975, but remains true today:
“…doctors are left to their own prejudices. Much of what passes under the guise of medical counseling really consists only of saying no; of advising the safe way, the way of least resistance. Not long ago, I attended a medical symposium and heard a famous geneticist talk learnedly about the need for “objective” counseling in cases of genetic disease. Fine. Then he concluded his remarks with this highly subjective sentence: “I cannot imagine a family who would not wish to avoid the emotional and financial stress imposed upon them when a hemophiliac is born.
“…If genetic counseling is to be meaningful, then not only must those counseled be informed of the purely scientific facts, they must also be encouraged to believe in themselves, in their own capacities to live and grow. They must be counseled not only to fear, but to be brave enough to live with a question.” (Massie, R. and Massie, S.: 1975, Journey, Alfred A. Knopf, New York, New York, pp 244-5)
I agree with BillyHW that much of the venom directed toward Sarah Palin may have been in reaction to her contrarian example of welcoming Trig. However, the math is predicated on the assumption that all pregnant women undergo screening for Down Syndrome. A significant subset of prolife women decline such testing (and thanks to Tanya for reminding us that we can still say no!), and so don’t figure into the denominator of these statistics. It would be interesting to know the percentage of women who decline such testing when its offered, but I’ve been unable to find statistics on the question.