Michael Cook over at BioEdge reports on a recent story in the Daily Mail which hails the discovery of a blood test that can detect Down's syndrome in unborn babies. But, as Cook points out, there are a couple of significant weaknesses in the story. One is that the reporter understated the time-line involved -- the test is actually years away from reality.But the second is much more serious. For in the reporter's enthusiasm, she downplays a major effect the availability of this test would produce; namely, the destruction of more unborn children who are found to have Down's. Indeed, the whole spin of the story further de-humanizes people with Down's, increasing their marginalization and, quite literally, their endangerment.
I print below Cook's brief analysis of the story but, just as important, I then print a couple of comments that appeared below it on the BioEdge page. The first is a cold-hearted question by a doctor and the second is a compelling, beautifully authoritative reply from a mother of two Down's syndrome girls. Read on.
First Michael Cook:
Recent media coverage of a blood test for Down’s syndrome suggests that children with the condition are being depicted as non-persons. The Daily Mail, Britain’s second-largest newspaper, announced that “A quick inexpensive blood test for Down's syndrome that could save the lives of hundreds of unborn babies each year is being developed by scientists”. However, the main result of the test would to terminate hundreds of unborn babies with Down’s syndrome.
The lives of unaffected babies could be considered “saved” only in the sense that they would not be miscarried as a result of invasive investigations to detect and destroy Down’s syndrome babies.
Despite the publicity given to this preliminary report of research by Dutch scientists at the annual conference of the European Society of Human Reproduction and Embryology, a successful test is still several years away. Professor Stephen Robson, a spokesman for the Royal College of Obstetrics and Gynaecology, told the Daily Mail that described it as the “holy grail” of pre-natal testing.
Following Cook's description of the Daily Mail story, a Dr. Cunningham sent over this fatuous query, one obviously meant to suggest that people with Down's syndrome (as well as people with other birth defects) would rather not have been born. He asked, "How many people would like to have been born with Down's syndrome or other serious physical or mental disability?"
To which this loving mother responded with more wisdom and force than certainly I could have mustered:
Those who are born with Down syndrome never know life differently. We shouldn't project how we feel with our current level of intelligence on what it would be like if we were different.
My two daughters with Down syndrome are quite happy as they are. Sure they have frustrations when, for their safety, there are some activities they are not allowed to do that most other teenagers their age can do; but I'm sure every teenager feels frustrated at times. But they don't spend their days lamenting their lack of intelligence partly because they don't have the insight or experience to imagine what it is like not to be them. It would be like a genius pitying me because I'm not a genius too. But while I might occasionally wish I had extraordinary mental abilities on the whole I'm happy with the level of intelligence I've been blessed with.
Getting back to the topic, in New Zealand we now have "quality improvement measures for antenatal screening for Down syndrome" which are being implemented because too many normal babies were being accidentally miscarried because of the amniocentesis test offered to "at risk" women based on age alone (and presumably too many babies with Down syndrome were being "missed").
Now combined serum and ultrasound screening is being offered to every pregnant woman regardless of age, in full knowledge that more babies with Down syndrome will be aborted, although that is not the avowed intention. Doesn't this give you a clue as to whose life is considered the more valuable? So did the media story of the doctor who selectively aborted the "wrong" twin. The surviving twin with Down syndrome was also aborted once the parents were told of the mistake. But how many reporters stopped to question why one twin's life was more valuable than the other's? Why there was a "right" and "wrong" twin in the first place?
