Just when some scientists are on the cusp of discovering a
drug for treating people with Down syndrome, others are busy refining the
technology which will make them disappear completely. A feature in the New
York Times Magazine recently highlighted the work of Alberto Costa, a 48-year-old physician and neuroscientist at
University of Colorado-Denver School of Medicine. He has started a clinical
trial on young adults to see if the drug memantine helps them become “smarter”.
It is the first randomized clinical trial ever to take a drug that worked in
mice with Down syndrome and apply it to humans.
successful, it could be of enormous help for the 6,000 children who are born
with Down syndrome each year in the United States. But Dr Costa faces an uphill
battle for funding.
syndrome children are being aborted so fast that funding bodies think that
there is little point in looking for a cure. “The geneticists expect Down
syndrome to disappear,” Costa says, “so why fund treatments?” He fears that new
quick non-invasive diagnostic tests will lead almost all women to abort Down
like we’re in a race against the people who are promoting those early screening
methods. These tests are going to be quite accessible. At that point, one would
expect a precipitous drop in the rate of birth of children with Down syndrome.
If we’re not quick enough to offer alternatives, this field might collapse.”
estimates are that in North America around 90 percent of unborn babies with Down syndrome are aborted
and the same is true in European countries. A report from Denmark characterized “eliminating Down
syndrome” (sic: people with Down syndrome) as a move towards creating a
“perfect society”. The
ethics issues prenatal screening raises will only become more prevalent as the
range of tests expands, they become safer for the pregnant woman and cheaper
and easier to use, and many are presented as routine precautions in medically
managing a pregnancy.
The most recent announcement concerning a prenatal
test is identification of a baby’s sex at seven weeks of pregnancy. This raises
fears of sex selection, which many people regard as unethical, at least when
not carried out for serious medical reasons.
As we can see in India and China, where sex selection
through abortion and infanticide has resulted in many millions of missing
girls, the decisions of individuals have a cumulative effect on society,
itself. For instance, many young men in those countries cannot find a wife and
abuse of women is augmented.
The recent riots in England also provide an
analogy: one person acting aggressively or a small group of people rioting is
different in kind, not just degree, from a very large number doing so, although
both situations may raise many of the same ethical and legal issues. The same
is true of individuals “choosing” their children. So what limits should we
place on their doing so in the interests of society and the harmful impact it
would have on our shared values?
Widespread, publicly endorsed and paid-for
pre-natal screening to eliminate people with certain conditions, for instance,
Down syndrome, implicates, among other values, those of respect for both
individual human life and human life in general; and respect for “disabled”
(differently-abled) people, both as individuals and as a group.
The implementation of negative eugenics with
respect to disabled people is the unavoidable collective impact of these screening-based
decisions. As harsh as the language is, we can be described it as a “search and
destroy” mission to wipe out certain groups of people.
And where might society supporting such screening
lead? For instance, what would
endorsing a belief that a society without disabled people can be considered
“perfect” say about us? What kind of society might it result in?
We have unprecedented new technoscience powers and
history teaches us that the use of science in the search for human perfection
has been at the root of some of the greatest atrocities in terms of respect for
human life, individual humans and human rights.
Offering prenatal screening as a routine procedure communicates
a message that a woman is conditionally pregnant, until she is told there is
“nothing wrong” with the baby -- until the fetus is certified as “normal” -- or
it is the “right sex”. This approach contravenes our concept of parental love –
that it is unconditional - that we love our children just because they are our
The societal level message we will unavoidably be
delivering is that “We don’t want you in our society unless you measure up to a
certain genetic or other standard. You are only a potential member, until
you’ve passed the admission test that we are willing to pay for with our tax
dollars and implement”.
And what about the “everyday ethics” involved in screening?
Far from all physicians are competent to obtain informed consent to these tests
and carry out follow up genetic counseling.
For many reasons, physicians tend to be very
pessimistic in predicting the impact, for instance, of Down syndrome on the
child and usually see no possible benefits from having such a child – they can
be astonished to learn of the joy, bonding and love such a child can bring to a
One cause of their ignorance is that the people who
could inform them otherwise are silenced. As Audrey Cole, a remarkable advocate
for the rights of disabled people and the mother of a 47 year old man with Down
syndrome wrote to me, “Our voice [against eliminating people with Down
syndrome] will, inevitably, be dismissed as the whinings of a ‘special
interest’ group. I have never been able to understand why my feelings as
a parent of a wonderful, caring, gentle man can be so easily dismissed as
“special interest.” I am frightened of the times that seem to be coming.”
And, how will women who refuse screening be
regarded? What will be the impact on families who “choose” not to abort when
“abnormalities” are discovered? Will
they be seen as socially irresponsible? That belief, in itself, creates a
climate of coercion not to proceed with the pregnancy.
Perhaps, in deciding about the ethics of prenatal
screening we should recall it’s true for all of us that “the well are only the
undiagnosed sick” and we are thankful that no one “deselected” us.
Somerville is director of the McGill Centre for Medicine, Ethics and Law in