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Women whose babies are prenatally diagnosed with Down syndrome report that "their obstetricians had failed to provide enough up-to-date printed material" and "felt rushed or pressured into making a decision about continuing the pregnancy." The study of mothers whose children have Down syndrome was published in the American Journal of Obstetrics and Gynecology.

One woman quoted in the study said that in 1999, when her child was diagnosed with Down syndrome, the doctor "showed a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us that our child would never be able to read, write, or count change."

In response, senators Sam Brownback and Ted Kennedy are sponsoring legislation that would require doctors to provide current medical information about any diagnosed disability after a prenatal test, along with treatment options, the expected development of the child, and information about local support communities.

Testing babies while still in the womb is normally offered by doctors, and often recommended to women more than 35 or couples with other risk factors. Many states require doctors to offer prenatal genetic testing to all pregnant mothers. However, there are no treatment options for the genetic diseases tested for, such as cystic fibrosis, spina bifida, or Down syndrome.

"A lot of the testing is done for disease processes that we really can't do anything about," says Stephen Nelson, staff neonatologist and director of the Neonatal Transport Service at MeritCare Children's Hospital in Fargo, North Dakota. "Our ability to diagnose diseases prenatally exceeds our ability to treat."

Prenatal testing is a way of learning valuable information about a baby, but just as important is what parents will do with that information, says John Kilner, president of the Center for Bioethics and Human Dignity at Trinity International University in Deerfield, Illinois. "It is usually used to find out if there is something there you don't want so you can abort." According to the study, many doctors assume that women who undergo testing would choose to abort. But there are other reasons to learn about the health of a fetus. Kilner says, "If the purpose is to be able to prepare as best one can for the well-being of the fetus and the mother, that's a more noble rationale."

Because there is a minor possibility of miscarriage and other problems caused by the tests, prenatal tests should only be used if other factors, such as the age of the mother or a family history of genetic diseases, outweigh the risks, say doctors and bioethicists. Kilner said that when he and his wife had trouble conceiving their second child, doctors offered prenatal tests. "It was just offered to us as obvious in the normal course of things," Kilner said. "It was only in response to our questions that we discovered there was any risk at all. And then when we realized that we would only be getting information that would lead us to abort, it was like, wait a minute."

Often, doctors feel they must offer prenatal tests in order to avoid malpractice lawsuits. "There's a great deal of fear on the part of obstetricians that if they don't offer genetic testing and the baby does have one of these conditions and it's recognized after birth, that the obstetrician can be sued for wrongful birth," says Nelson.

A parent files a wrongful birth suit if she says that had she known her baby would have a genetic disease, she would have aborted. Doctors have been successfully sued for the costs of raising a disabled child if they didn't offer tests that would have discovered the disability, or if they didn't discover a disability even with prenatal testing.

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April (Web-only) 2005, Vol. 49