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Friday, May 28, 1999Genetic cleansing at its finest
Society's attitude means we are sweeping 'human deformity under the rug'
Until recently, we didn't expect our babies to arrive in a nice-looking package with an inspector's approval number stamped on their foreheads, and we couldn't return them if the goods were found to be defective.
But new medical technologies have given us the power to seek out genetic flaws while the baby is still in the womb and suddenly our standards of acceptability have changed. We no longer just question the quality of life that imperfect children can have -- we also debate whether they should even be born.
Enhanced forms of ultrasound, amniocentesis and prenatal genetic screening, a sophisticated analysis of the foetus' genetic material, have all been fine-tuned to detect the slightest errors in a developing baby's biological machinery. In a small number of cases, this capability allows doctors to treat the condition in utero or as soon as the child is born. But such treatments are rare and in the majority of cases, the predictive technology is more advanced than the treatment options. Cures are in the distant future.
As a result, these diagnostic investigations are often little more than search-and-destroy missions to eliminate the imperfect and, in the words of some, a high-tech means of "genetic cleansing."
Over the past month, the public has become privy to the inner details of this aspect of medicine and many people don't like what they are hearing. Disturbing stories of genetic or late-term abortions first began to emerge when devastated nurses from Calgary's Foothills Hospital told the press about viable, but imperfect, foetuses that were left to die. As a storm of controversy threatened to envelop the hospital, officials quickly obtained a publication ban on further stories by Alberta Report, the magazine that reported the news.
But the circumstances of these events -- babies being left to die, reports that health-care workers violated their consciences to keep their jobs and the publication ban -- all point to a dire need for an open and reasoned debate about these procedures.
To many, the most repugnant aspect of genetic abortions is that they are often performed late in pregnancy and, therefore, can result in the birth of a live baby. A British Columbia coroner's investigation found that 16 aborted babies had been born alive since 1995, with the largest baby being born at seven months gestation and weighing in at 2.2 kilograms. These babies are denied food, fluids and breathing assistance until they die.
A less emotional, but far more insidious aspect of these procedures, is the very idea that children with genetic defects should be eliminated. Officially, abortions are only performed on babies with lethal abnormalities and are likely to die soon after birth. But, unofficially, any anomaly is fair game, and doctors say that late-term abortions have also been performed on children afflicted with "Down's syndrome, physical disabilities or even sheer unwantedness."
This is the real issue that underlies genetic terminations -- the notion that we can somehow justify the selective killing of less-than-perfect babies. In the words of one physician, we are "using technology to sweep human deformity under the rug." Such attitudes only fuel society's fear of imperfect children.
Prenatal screening creates the illusion that we can control our genetic destiny. Thus, we now expect to have genetically perfect children and feel well within our rights to reject anything less. Reports from medical journals state that 92% of infants diagnosed with Down's syndrome in utero are aborted, while 80% of infants are aborted when any kind of genetic imperfection is found. These are rather frightening statistics when one considers that we all carry at least five genetic defects of some sort. Still more ominous is a report from The Lancet that states that over a five-year period, 174 babies were born healthy -- even after they had been diagnosed with abnormalities.
For the most part, society allows medical technology to proceed unchallenged by turning a blind eye to the uncomfortable issues that stem from its use. But our rapidly expanding knowledge of the human genetic code will only increase the array of choices that are available to us. Before we settle into accepting the easiest option (aborting the imperfect), we must have an informed public discussion of all the options and issues raised by genetic testing.
We've had a peek behind the hospital doors and been exposed to the realities and ethical dilemmas that are associated with prenatal diagnostic procedures. We are using technology to destroy children who are less than perfect. If, as a society, we do not think this is acceptable, then we need to say so.
Susan Martinuk is a Vancouver writer and broadcaster.
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