The Problem With Genetic Testing

Advances in reproductive medicine and diagnostic technology make the miracle of childbirth less mysterious, but they introduce new ethical dilemmas for parents. The Los Angeles Times offers a truly disturbing look at the practice of one of the few late term abortion doctors in the country in A Late Decision, a Lasting Anguish.

In one section the complex role of amniocentesis tests is illustrated.

For [Katie] Plazio (not her actual last name), the heartache began with the unexpected. After a decade of infertility, she was stunned to feel a kick to her ribs as she sat through a meeting in February 2001. She had been dieting for weeks, running five miles a day – and wondering why she still couldn’t squeeze into her pants. She was six months pregnant.

Overjoyed, Plazio and her husband scheduled an amniocentesis. The preliminary results were clean; bursting with excitement, Plazio, then 43, bought a baby blanket dotted with pale blue bunnies. Ten days later, her doctor called with devastating news: More complete genetic tests had determined that their son had Down syndrome.

Plazio had studied special education in college; working with adults with Down syndrome, she had seen their lives as lonely, frustrating, full of hurt. She was not sure she could find joy in raising her son to such a future. She didn’t think she could cope with what she expected would be a lifetime of sadness and struggle.Plazio aborts her child in the 29th week of her pregnancy and, in what could hardly be considered a shock, she’s arguable worse off.

Since her abortion, Plazio has suffered such severe panic attacks that she can’t drive even as far as the high school to watch her daughter cheerlead. She has gained 60 pounds as she battles depression. The abortion she sought to preserve her mental health has left her deeply shaken; doctors say she suffers from post-traumatic stress syndrome.

On both occasions when offered the chance for amnio tests we turned them down. Our decision was simple; if we had found out that we had a child with Downs coming (for example), would we still have the child? Our answer was, ‘yes.’ This obviated the need for genetic testing. Conception and child birth in humans and animals is not a perfect process – there are all manner of miscarriage, defects, and death – but the incidences of things going wrong is statistically very low, and lower with quality prenatal care.

For all the advances in reproductive and neonatal medicine there’s still an element of what I’ll call “the divine” (you may substitute “the mystical,” “the magical,” etc.) in the process. We are closest to God at birth and death, and when we inject ourself into the process we automatically change “the divine” outcome. This is not necessarily a bad thing, plenty of people are saved from heart attacks, etc., it’s merely instructive to note that we’ve changed the outcome that was naturally occurring.

In the process of conception there’s a natural process in action, which for many couples is broken. Modern medicine offers much better odds of overcoming infertility and delivering healthy babies. One thing about medicine and pregnancy worth noting, in my opinion, is that it is possible to get too much information during pregnancy. Prospective parents are full of conflicting emotions as birth approaches and there are all sorts of tests that can signify all sorts of problems (or in many cases just the possibility of problems) for the developing infant.

By and large doctors fail to prepare parents for the ethical dilemmas they could face if prenatal tests reveal issues. Getting news about the possibility of genetic abnormalities can throw a parent, a family, or a marriage, into turmoil which the medical profession doesn’t even try to address. My belief is that unless you know (in advance) what you’d do with the information an amnio test might provide, you’re asking for trouble.

If you don’t know what you’d do if a genetic test showed that you had a child with Down’s (for example) on the way you’d be better off skipping the tests entirely. If you think you know what you’d do, read that Times article again…

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