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.)
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.
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