
A number of
devastating genetic diseases are slowly disappearing because of genetic
testing, according to a report by Associated Press. Tay-Sachs disease, a neurological illness that cropped up among Ashkenazi, or Eastern
European Jews, has almost disappeared. Affected children lack a key enzyme and
this causes them to decline physically and mentally until death at about the
age of 4. But in the last decade, there have only been about a dozen cases of
Tay-Sachs each year in the US.
“Now, more women are being tested as part
of routine prenatal care, [says AP] and many end pregnancies when diseases are
found. One study in California found that prenatal screening reduced by half
the number of babies born with the severest form of cystic fibrosis because
many parents chose abortion.”
In California, for
instance, Kaiser Permanente, a health care group, offers pre-natal screening.
From 2006 to 2008, 87 couples were identified as carriers of cystic fibrosis mutations and 23 foetuses were found to have the
disease – 20 of them were aborted.
Another fatal disease
associated with Ashkenazi Jews is familial
dysautonomia, which affects children psychologically, mentally and physically. It
causes faulty nerve development, floppy muscles, digestive and other problems,
and kills many by young adulthood. Because of screening only one child is born
with the condition a year in the US and geneticists think that the disease may
cease to exist.
But is this an unreserved good, asked
Columbia University medical historian Barron Lerner in a thoughtful article in
the New England Journal of Medicine last year. Is it tantamount to eugenics,
with all its horrific baggage? Will the disappearance of the disease make fund-raising
for research into alleviating it harder? ''If a society is so willing to screen
aggressively to find these genes and then to potentially to have to abort the
fetuses, what does that say about the value of the lives of those people living
with the diseases?'' he asks. ~ New England
Journal of Medicine, Oct 22, 2009; AP,
Feb 17