New Tests Make For Hard Choices

Amy Harmon in the New York Times (syndicated version of the article is linked) looks at the dilemma facing parents to be as genetic screening tests improve.

Fetal genetic tests are now routinely used to diagnose diseases as well known as cystic fibrosis and as obscure as fragile X, a form of mental retardation. High-resolution sonograms can detect life-threatening defects like brain cysts as well as treatable conditions like a small hole in the heart or a cleft palate sooner and more reliably than previous generations of the technology. And the risk of Down syndrome, one of the most common birth defects, can be assessed in the first trimester rather than waiting for a second-trimester blood test or amniocentesis.

Most couples say they are both profoundly grateful for the new information and hugely burdened by the choices it forces them to make. The availability of tests earlier in pregnancy mean that if they opt for an abortion it can be safer and less public.

But first they must decide: What defect, if any, is reason enough to end a pregnancy that was very much wanted? Shortened limbs that could be partly treated with growth hormones? What about a life expectancy of only a few months? What about 30 years? Or a 20 percent chance of mental retardation?

Striving to be neutral, doctors and genetic counselors flood patients with scientific data, leaving them alone for the hard conversations about the ethics of abortion, and how having a child with a particular disease or disability would affect them and their families. There are few traditions to turn to, and rarely anyone around who has confronted a similar dilemma.For us it was simple, we determined that regardless of what such a test may show we would still have the child. Given that, we had no need for the tests.

I know people who have had healthy babies who were told during their pregnancy that the baby had an “increased likelihood of… (some genetic condition).” What the hell are you supposed to do on hearing that?

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One Response

  1. BoDiddly June 22, 2004