Building a Better Baby
HOWARD, AGNES R.
Building a Better Baby The dark side of universal prenatal screening. by Agnes R. Howard We may not yet have mastered a way to insure perfect babies, but researchers are hard at work improving...
...This boils down to a judgment that women would rather forfeit a healthy baby than brook the possibility of raising an abnormal one...
...Entitled "Cost utility of prenatal diagnosis and the risk-based threshold," it reports the findings of a survey of 534 women of diverse backgrounds, aged 16-47, who were asked about the "time-tradeoff utility" of having a child born with a chromosomal abnormality...
...To admit this is not to place a sinister cast on the issue...
...The first is our contemporary treatment of childbearing as a medical process...
...Under the guise of extending opportunity to women by giving all "informed choice," they would, in practice, burden every mother with the expectation that she bring to birth only a healthy baby...
...Already we act as though what gives moral standing to pregnancy is the choosing of it, preferably in advance, if necessary after the fact, but always the conscious determination to continue rather than end it...
...As Barbara Katz Roth-man argued in her important 1986 book, The Tentative Pregnancy, the use of amniocentesis and CVS may make a woman reluctant to acknowledge she is going to have a baby until a favorable test result has signaled it is safe to keep the child—sometimes well into the second trimester, after she has started to feel the baby kick...
...The two commentators whose remarks accompany the Lancet article express some reservations about this...
...argue that the familiar age threshold for prenatal diagnosis should be abandoned...
...How did we get here...
...Fetal quality controls would fit right in alongside the many other tests a pregnant woman undergoes...
...In the January 24 issue of the British medical journal the Lancet, Ryan A. Harris, A. Eugene Washington, Robert F. Nease Jr., and Miriam Kuppermann maintain that all pregnant women—not just those over 35—should be able to choose either amniocentesis or chorionic villus sampling (CVS), since all would benefit from knowing whether a fetus were abnormal...
...Rayna Rapp, an anthropologist who studies prenatal testing, writes of a woman who received an unhappy diagnosis and entered her doctor's office in tears, only to be scolded (comforted...
...True enough...
...The Lancet article is particularly troubling for the way it makes its case...
...And it would have a further advantage: A woman who failed a FASTER test could terminate her pregnancy before it showed...
...This pattern of thought makes it easier to hazard a healthy fetus in order to prevent having a defective one, without admitting to ourselves that this is our calculation...
...It rests, they say, on a misjudgment about the way women weigh the risks of miscarriage caused by anmiocentesis against the risks of Down syndrome...
...Examining the introduction of fetal screening in the Netherlands in the late 1980s, Rothman found that midwives, who presided over most deliveries there, resisted the tests...
...They contend that women are much more worried about having a Down syndrome baby than they are about losing a normal baby to miscarriage after the test...
...To institutionalize these tests may damage the way women perceive pregnancy...
...Screening pregnant women this way could reduce the use of the more invasive amniocentesis, normally performed at 15 to 18 weeks...
...In any prenatal diagnostic intervention," they note, "there are ethical questions not directly addressed by economic analysis...
...By whatever means it is obtained, of course, this knowledge is provided not just to satisfy idle curiosity...
...The authors analyzed the respondents' preferences alongside published case studies and trials of prenatal testing, abortion rates, and cost data...
...While the FASTER camp, who call for early screening, and the Harris camp, who stress uniAgnes R. Howard teaches at Gordon College in Wenham, Massachusetts...
...In a culture where choosing the test is roughly equivalent to choosing abortion for an abnormal fetus, a decision to make the test a routine part of prenatal care would lend to ensuing abortions an air of inevitability, even medical necessity...
...Many elements have helped bring us to a point where it could seem prudent to screen all fetuses in order to reduce Down syndrome births, and a considerable part of the problem rests with two faulty assumptions about pregnancy...
...The costs of the test, they argue, are amply repaid by either the reassurance that the baby is normal or the ability to avoid the difficulties of having a Down syndrome child: "The more reassurance women desire, the more cost effective is the testing...
...The work of Barbara Katz Roth-man once again provides a cautionary tale...
...It's a collection of cells that made a mistake...
...At present, prenatal diagnosis is mostly used with higher-risk patients, particularly those past 35, the age when the probability of Down syndrome begins to overtake the probability of procedure-related miscarriage...
...Harris et al...
...this way: "That isn't a baby...
...Depending on the sensibilities of her obstetrician, bad test results may transform somebody's baby into a biological complication to be remedied by a medical procedure...
...After all, one could make the case that all children impose a cost in quality of life, even entirely healthy, normal ones...
...To press pregnant women to learn about genetic disorders is to reinforce the notion that it is permissible to give birth only to normal babies...
...Granted, wide-scale testing would offer reassurance to many, but at the high cost of further degrading the way we bear ourselves toward the children we bear...
...The authors calculate that having the test and aborting an abnormal child can gain a woman nearly $15,000 per year in improved quality of life (QALY...
...A woman starting prenatal care can expect to be asked, "Is this a wanted pregnancy...
...to weigh in economic terms the danger of having a Down syndrome baby is already sinister enough...
...We can act as though, until the test is done with good results, the pregnancy isn't quite real...
...About 90 percent of women who discover their baby has a chromosomal disorder abort it...
...The second cultural problem is the assumption that pregnancy is essentially a matter of choice...
...Explaining their decision not to recommend screening to their patients, some midwives asked: "Why spoil the pregnancy...
...The working assumption has been that women would be unwilling to incur the risk of miscarriage unless the risk of having an abnormal child were greater...
...The effort of Harris et al...
...Harris et al...
...While some obstetricians are exploring alternatives to amnio, however, another group of doctors is calling for broadened access to it...
...by Agnes R. Howard We may not yet have mastered a way to insure perfect babies, but researchers are hard at work improving methods to eliminate imperfect ones...
...It is grotesque to measure children's worth primarily in QALY terms...
...To universalize genetic diagnosis is to entrench even more deeply than we already have the idea that a baby becomes a baby only when we choose to grant that status—if and when it passes genetic muster...
...versal access to genetic diagnosis, advocate different kinds of prenatal testing, they have a common aim...
...Although Rothman supports abortion, including in Down syndrome cases, she regrets the consequences of the tests...
...That is, there is a human good that is fostered by allowing pregnancy to be a hopeful time, a worthwhile stage of motherhood...
...turn that assumption on its head...
...This winter brought news that specialists are pioneering FASTER (First and Second-Trimester Evaluation of Risk), a combination of maternal blood tests and ultrasounds to detect Down syndrome at 10-13 weeks...
Vol. 9 • April 2004 • No. 29
