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.
Unfortunately, there are currently no standards for how the information obtained from a prenatal test should be used. "We've got policies that mandate the tests to be offered, but we have no public policy to shape the ethic of how you respond," says Carrie Gordon Earll, senior policy analyst for bioethics at Focus on the Family.
Pressure to abort
"We have been able to screen for certain conditions in the womb for quite some time now, but I'm concerned that we don't have a great track record for handling that information very well," Sen. Brownback, R-Kan., said announcing his legislation. "For some conditions that can be detected in the womb, we are aborting 80 percent or more of the babies who test positive."
According to the American Journal of Obstetrics and Gynecology study, 20 percent of doctors said when a prenatal test discovered Down syndrome, they encouraged mothers to abort, or they emphasize the negative aspects of the disease "so that parents would favor a termination." Most doctors, however, tried to remain unbiased in telling parents the results of a prenatal test.
Still, "there's a lot of unspoken pressure to abort once you've had the testing done," says Nelson. Throughout the medical literature, "parents are blamed if they have a baby with Down syndrome." Parents who decide to give birth to a Down syndrome child " say that they feel like outcasts, they feel blameworthy."
Because abortion is seen as the preferred option, "Soon, it will be seen as unnecessary to fund therapy and care for the disabled," says Amy Laura Hall, assistant professor of theological ethics at Duke Divinity School. "There is no will to care for the disabled."
Eugenics by abortion
The Brownback/Kennedy bill could help alleviate cultural pressure to abort. "The effect of this sort of 'weeding out' is creating new eugenics, a form of systematic, disability-based discrimination," said Brownback. "We don't want a world where parents feel driven to justify their children's existence. We need to link parents with these programs so that they are equipped with all the information they need to hopefully make a life-affirming choice."
Our culture's image of the nuclear family encourages people to abort children that don't fit the model, says Hall, who is working on a book on the rise of medically enhanced children and scientifically standardized families. "We have the model of family life with two kids who look like their parents. We have our kids appropriately spaced to fit the model of the ideal family. This has contributed to the abortion culture."
Abortion is also an expectation among doctors. According to the study, "Many of the mothers who responded to this survey never planned to terminate the pregnancy and were upset when their physicians provided detailed descriptions of pregnancy terminations without knowing whether they would like those options discussed."
There has been at least one attempt to restrict abortions because of a perceived undesirable characteristic in a fetus. The Maine state house is considering a bill before it that would outlaw aborting homosexual fetuses, if scientists ever discover a gay gene. "It's not surprising to see that happening," says Kilner. "But I don't think it's a tactic that's likely to have any practical effect."
For many parents, having a child with a disability can be difficult but profoundly enriching. "Scripture doesn't lie. These children really are gifts," says Nelson, whose son has a genetic disability. "Our other children have a much greater appreciation for people with differences as a result of their brother, Taylor. It's been a really remarkable experience for our family. He's truly been a gift to our family."
Prenatal testing can help parents prepare for the unique challenges of a disabled child. The Harvard study found that women whose babies parentally tested positive "were generally happier over the birth of their infant with Down syndrome than their counterparts who had received the diagnosis postnatally."
Prenatal diagnosis can also help parents determine where to give birth in order to make sure the baby will have proper care immediately after delivery. "The questions that parents ought to ask are, What conditions will be tested, What are the risks, Who will have the information, Are these conditions treatable?" says Nelson. "It's perfectly ethically appropriate for Christians to undergo prenatal testing. The question that they have to ask themselves is, What are we going to do with this information."
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The American Journal of Obstetrics and Gynecology study, Prenatally diagnosed Down syndrome, is available online.
The National Down Syndrome Congress and the National Down Syndrome Society have some concerns about the bill.