Will Down Syndrome Disappear?
Currently, when expecting parents learn that their fetus has Down Syndrome, 85 – 90% choose to terminate the pregnancy. Today’s Time magazine reports about a new blood test that, by analyzing an expecting mother’s DNA, can detect Down Syndrome in 98% of cases. And, it is suggested, if people know their fetus has Down Syndrome, they will decide not to have that child—and then there will be fewer and fewer individuals with Down Syndrome.
Down Syndrome (also trisomy 21) is a developmental disorder that causes lifelong mental retardation, developmental delays and other problems. Currently, pregnancy mothers are screened to see if their child might have Down Syndrome through amniocentesis or chorionic villus sampling (CVS); amniocentesis carries a 0.5 to 1.0% of miscarriage. Pregnant women can also be tested using ultrasound nuchal translucency screenings, which measure the amount of fluid at the back of a fetus’ neck; this test offers ‘odds that a woman is carrying an affected fetus.’
The new blood test, developed by researchers in Hong Kong, is said to be more accurate, but is currently too expensive to be widely used:
To figure out whether the DNA blood test works, the researchers — led by Dennis Lo at The Chinese University of Hong Kong — used DNA technology to analyze blood from 753 pregnant women in Hong Kong, Great Britain and the Netherlands who were considered at high risk of having a baby with Down syndrome. Testing revealed that 86 women were carrying an affected fetus. Other blood tests available to detect the condition carry the risk of false positive results, which results in anxiety and unnecessary further testing, but the DNA-based blood test is highly accurate, according to results of the research, which was published this week on the website of the British Medical Journal.
Regarding the ethical implications of such a prenatal test, Time magazine quotes Brian Skotko, a doctor in the Down syndrome program at Children’s Hospital Boston who also chairs the clinical advisory board for the National Down Syndrome Society:
“This test brings a lot of anticipation and welcome benefit, but it ushers in a whole host of provocative questions,”
…….“Will babies with Down syndrome slowly disappear, then babies with trisomy 18 and trisomy 13?…..As a clinician, I raise it as an open question. It’s a question of which forms of life are valuable.”
As the mother of a son with disabilities (autism), I can say that life raising a child with neurological challenges has been, well, quite challenging. I have had to learn a great deal to best take care of Charlie and while it has meant that things are not as I thought they might be, my husband, Jim Fisher, and I know that we cannot imagine life without him. We know that our lives are good, are better, because of him.
Prenatal genetic testing presents us with ethical issues that we’re not at all equipped to face. Are we going to start making judgments about some humans being ‘worth more’ or ‘more valuable’ than others, rather than acknowledging and accepting the full range and beauty of human diversity and difference?
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Photo by David Salafia.