During the past two decades, prenatal screening for fetal defects has become a standard part of nearly every pregnant woman’s medical care. Tests conducted during the first half of pregnancy are designed to detect a wide range of genetic and other disorders, and to give women the option of obtaining abortions if defects are diagnosed. Some people have heralded this development as a breakthrough in the age-old war against disease. Others regard it as more than that: a tool to improve society. Modern birth control methods, the argument goes, brought us quantity control; the addition of prenatal testing offers a system of quality control. For the first time in history, parents are able to customize, albeit in limited ways, the kinds of children they bring into the world.
Prenatal diagnosis may be a routine procedure, but it raises a number of troubling issues. While the women who avail themselves of the tests are usually worried about their children’s health, the political, legal, and medical communities have their own reasons for encouraging large-scale screening for fetal defects. Unbeknownst to most prospective parents, moreover, scientists are still debating the safety of the most widely offered screening tests. The ethical issues raised by prenatal screening are even touchier.
Prenatal testing is eradicating illness in a whole new way”preemptively. In so doing, it is imperceptibly altering the pattern of disease in this country. It is changing society’s fundamental attitudes toward parenting, toward sickness, and toward social responsibility. It is even influencing women’s notions of childbirth, medicine, and motherhood.
The most common form of prenatal testing is ultrasound imaging, which uses sound waves to produce a picture”or “sonogram””of the fetus. Today, more than 80 percent of all pregnant women in the United States receive a sonogram during their pregnancy. Women deemed at “high risk” for giving birth to a child with chromosomal abnormalities are also offered amniocentesis, a procedure in which a needle, guided by ultrasound, is inserted into the uterus and withdraws a small amount of amniotic fluid for cell analysis. Amniocentesis is usually done between the sixteenth and twentieth weeks of pregnancy. Women may also opt for the somewhat riskier procedure of chorionic villus sampling (CVS), which is usually done between the tenth and twelfth weeks, or earlier on an experimental basis. CVS removes a small amount of chorionic villi (hair-like fringes of the placenta) for analysis, either by using a catheter to pass through the cervix to the womb or by inserting a needle into the abdomen.
Since CVS and amniocentesis are invasive procedures that can harm both the mother and the developing fetus, researchers have long sought a method of testing that cannot endanger mother or child. In the early seventies scientists discovered that high levels of alphafetoprotein (AFP), which is usually leaked from the fetus into the mother’s bloodstream in very small quantities, could indicate the presence of neural-tube defects such as anencephaly (incomplete development of the brain) and spina bifida (malformation of the spine), defects that affect one to two in every 1,000 live births. In 1983 it was discovered that an unusually low level of AFP in the mother’s bloodstream was a possible indication of Down’s syndrome. A simple blood test for AFP is frequently offered to women”regardless of age and known genetic risk factors”between the sixteenth to eighteenth week of pregnancy. After ultrasound, it is the second most common form of prenatal testing.
More experimental and high-risk diagnostic procedures include cordocentesis (which examines fetal blood drawn from the umbilical cord), fetal skin sampling, and fetoscopy. And what had long been considered the cutting edge of prenatal screening”the testing of embryos before implantation”is slowly becoming a reality. In this method, a couple undergoes in vitro fertilization, and the resulting embryos are genetically analyzed. The healthiest are implanted in the mother, while those bearing signs of genetic defect are discarded. Future forms of testing may push the screening process still earlier, before conception has taken place; research is already underway into the testing of oocytes before fertilization.
These experimental forms of genetic screening are clearly controversial. But even the most common forms of prenatal testing are open to dispute. Despite the matter-of-fact manner in which physicians offer the tests to their patients, their safety has never been scientifically established. Ultrasound, for example, which doctors present as a thoroughly uncontroversial procedure, is still being contested within the medical literature. A classic example of a “creeping technology,” ultrasound in pregnancy has never been subjected to a large-scale randomized controlled trial to assess either its safety or usefulness. Ann Oakley, a historian of maternal medicine, has compared the growing use of ultrasound with that of X-rays, which became popular after the turn of the century and were widely used on pregnant women until it was discovered, a half-century later, that they could cause cancer in children.
The FDA regulates the energy output and manufacture of ultrasound devices, but there is no licensing or testing of those who operate the machines. Because of variations in scanning conditions and tissue properties, moreover, doses cannot be measured exactly; an NIH consensus conference on ultrasound concluded that “there are no data on the dose to either the mother or the fetus in the clinical setting.” The participants also noted that numerous animal studies suggest that exposing a fetus to ultrasound can affect prenatal growth, although there is considerable debate over whether the energy levels used in animal studies can predict the effect of lower levels of energy on humans.
The controversy surrounding ultrasound centers on whether the benefits of its use during routine pregnancies exceed its unknown long-term effects. Prenatal ultrasound is primarily used to verify conditions that the doctor or patient already suspects: it double-checks a diagnosis of pregnancy, establishes the age of the fetus, and confirms conditions”such as ectopic pregnancy, multiple pregnancy, or fetal death”that the doctor has deduced from the patient’s symptoms or the results of a physical examination. It may also reveal previously undetected fetal diseases or structural disorders in the mother. American and European researchers have repeatedly tried to determine whether the knowledge gained via ultrasound leads to a healthier baby, yet studies evaluating the impact of ultrasound on such key measurements as perinatal morbidity and mortality, birth weight, and Apgar scores (tests conducted immediately after an infant’s birth) have failed to establish any statistically significant effects.
The American College of Obstetricians and Gynecologists, following the formal position of the American College of Radiologists, has shied away from endorsing “routine” prenatal ultrasound. But in all its literature ACOG simply assumes that obstetricians will offer ultrasound as part of standard prenatal care. As one editor of an obstetrics journal wrote, “Although ultrasound screening is not absolutely necessary for routine prenatal care, I think its use as a screening examination in early pregnancy is here to stay.” It is left to the rare critic, such as Stephen Thacker of the Centers for Disease Control, to make the obvious point that “the acquisition of more information and the clinical impression that a procedure is beneficial do not necessarily lead to better outcomes.”
Amniocentesis and CVS do pose known dangers, and a physician is supposed to discuss these with the patient at the time the tests are offered and have her sign an informed-consent form. There is a miscarriage rate of 1-2 percent following CVS. The procedure also carries a small risk of uterine infection. In addition, recent studies in the United States and abroad have linked CVS to a number of birth defects, including missing or stubby fingers and toes, small tongues, underdeveloped jaws, and, in some instances, missing limbs.
Estimates of the possibility of miscarriage following amniocentesis range between .5 and 1 percent. Other documented long-term risks to children tested by amniocentesis include breathing and orthopedic problems, particularly club foot. There is also a possibility that the needle may come into contact with the fetus; one Canadian study discovered needle marks on six out of ninety-one infants whose mothers had the test. On rare occasions, deformities may result from a tap that depletes the amount of amniotic fluid to a dangerous level.
In both CVS and amniocentesis, an initial tap may prove unsuccessful. The doctor may fail to draw enough fluid, he may obtain urine instead of amniotic fluid, or cells in the sample may fail to grow. In such instances, the procedure may have to be repeated, which compounds the risk to the patient.
How is it that perfectly healthy women may find themselves having a series of medical tests, some of which pose distinct risks to themselves or their children? The typical pregnant woman would be disturbed to realize that a good deal of the testing that goes on is motivated by factors that are, at best, tangentially related to her well-being or the health of her child.
The use of AFP tests has a peculiarly nonmedical history. Both ACOG and the American Academy of Pediatrics urged the FDA not to approve early release of AFP test kits in the late 1970s. They noted that in order to detect enough cases of open spina bifida and anencephaly the tests would necessarily have a high false-positive rate”about fifty false positives for every true positive. They recommended that the FDA make its release contingent on laboratories’ ability to coordinate follow-up tests to weed out false positives, a crucial concern in a test parents may rely on in deciding whether to continue a pregnancy. But when the FDA went ahead and approved the marketing of the kits without these restrictions, ACOG’s legal department promptly issued a liability “alert” to its members, urging all obstetricians to offer the procedure to their patients. This, it said, should place the doctor in the “best possible defense position” in the event of a birth defect.
The momentum generated by this single recommendation”inspired by law rather than medicine”was powerful. To offset the inaccuracy of AFP tests, ACOG developed a rigorous protocol for obstetricians. If AFP levels are unusually high, for instance, doctors are urged to repeat the test. If the second test also comes back positive they are to do an ultrasound to determine the reason for the elevated AFP level (such as multiple pregnancy or inaccurate assessment of fetal age). If that is inconclusive, they are to advance to amniocentesis. If that is abnormal, they are to perform a high-resolution ultrasound. With each subsequent test, there is an increased chance that any number of anomalies, slight or severe, may be detected. Thus, a patient who follows her doctor’s suggestion to undergo testing for neural-tube defects might find herself, a few weeks down the line, being counseled to contemplate an abortion for a variety of lesser disorders for which she had no original intention of seeking testing.
Like the medical community, the public health sector has its own reasons for promoting widespread prenatal screening. The U.S. Department of Health and Human Services has announced a goal of screening at least 90 percent of the U.S. population “for fetal abnormalities,” an objective that “will be measured by tracking use of maternal serum alpha-fetoprotein screening tests.” The HHS report that explains this goal states that “current ACOG standards recommend that MSAFP screening be offered to all patients”-without noting that this was a legal, not medical, recommendation. Likewise, the California Department of Health, as part of its ambitious statewide screening program, requires everyone who offers prenatal care to inform pregnant patients of the AFP test in an effort to detect greater numbers of potential birth defects. The fact is that governments on both the state and national level have considerable interest in being able to point to reductions in disease. And morbidity and mortality rates are key expressions of a region’s standard of living.
When most people hear of “reducing illness,” they usually think of providing greater access to health care or developing new treatments for disease. Public health experts, however, frequently boast of reducing illness by means of prenatal diagnosis and abortion. The highly influential 1983 report of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research asserted that “genetic screening and counseling” may be used “to contribute to the public health goals of reducing the incidence and impact of inherited disorders.” Similarly, an article heralding the “Decline of Down’s Syndrome after Abortion Reform in New York State” boasted that “in 1975, terminations resulted in abortion of one-quarter of the expected cases of Down’s syndrome in upstate New York and one-half of the cases in New York City . . . . [I]t appears that abortion reform has become an effective measure to reduce the incidence of severe mental retardation.” In England, the journal Prenatal Diagnosis reported one regional study in which abortions after a diagnosis of neural-tube defects led to an 86 percent reduction in the birth of individuals with these disorders. The authors concluded that “the success of the program in medical terms is apparent.”
Policymakers and medical experts are under pressure not only to achieve noticeable improvements in health but also to reduce soaring health care costs. Widespread prenatal screening followed by abortion for fetal defects would accomplish both of these objectives. The motivation to reduce costs also helps explain the long-standing emphasis on preventing the birth of children with Down’s syndrome, a disorder that is more financially costly to society”accounting for about 15 percent of the institutionalized mentally retarded population”than it is personally costly to its victims. (There are certainly other disorders and diseases that cause greater pain and discomfort.)
In the 1950s and 1960s, when studies seemed to indicate that more than half the children with Down’s syndrome were born to mothers over the age of thirty-five, women over thirty-five were urged to have amniocentesis. When two decades of screening and abortion of Down’s fetuses in this age group failed to have a significant impact on the national Down’s syndrome population, new studies were undertaken. These revealed that only about 20 percent of Down’s children are born to women over thirty-five, and that in many cases (nearly a quarter, according to one study) the father may be the source of the extra chromosome that causes the disorder. By itself, then, amniocentesis of women over thirty-five would not do the trick. The discovery that Down’s syndrome could also be detected by the AFP blood test, which is safe enough to be given to all pregnant women, was therefore regarded as a major breakthrough.
There has been no shortage of arguments to eliminate the ill or disabled before they become a financial burden to society. In a survey of British obstetricians in the late 1970s, researcher Wendy Farrant discovered that two-thirds of the respondents rated “savings in costs to society of caring for people with disabilities” as an important benefit of a national screening program for neural-tube defects; 13 percent agreed that “the state should not be expected to pay for the specialized care of a child with a severe handicap in cases where the parents had declined the offer of prenatal diagnosis of the handicap.” More recently, the British Royal College of Physicians recommended a nationwide program of prenatal screening on the grounds that cost-benefit analysis showed that “it is cheaper to screen and counsel the whole population than it is to treat affected children who would otherwise be born to unprepared couples.”
Medical cost-benefit analyses are startlingly cold-blooded. Studies feature graphs comparing the costs to society of a disabled child with the expense of testing and abortion. Articles debate the appropriate discount rate that should be used in calculating the lifetime costs to the state of caring for a disabled individual. One recent study, which noted the growing cost of providing services for mentally handicapped young adults, lamented the increase in the number of patients with Down’s syndrome”an increase the authors attributed to medical advances that have allowed those with Down’s to live longer and healthier lives. Debate has surfaced within the cystic fibrosis community over whether advances in the comfort and lifespan of individuals with CF outweigh earlier arguments favoring abortion of fetuses diagnosed with the disorder.
Crucial to all the discussions, reports, and studies supporting prenatal testing is the assumption that women will have abortions if fetal defects are detected. The hard truth is that there are still very few conditions that can be treated in utero. Hospitals will occasionally do fetal blood transfusions or perform surgery for urinary tract obstruction, and drug therapy is useful for treating some metabolic diseases. Experimental research in the area of gene therapy, the replacement or correction of a defective gene in the fetus, would open up the possibility of new forms of prenatal treatment. For the foreseeable future, however, the chief purpose of prenatal diagnosis is to give parents the opportunity to abort a fetus diagnosed with a disorder. It is telling that research in the area of prenatal diagnosis is overwhelmingly concentrated on finding ways to diagnose conditions in the first few months of pregnancy, when abortion is a simpler and safer procedure, even though information about the fetus is much richer later on.
Yet the “A” word is almost never mentioned in the screening literature. When allusion to the subject is unavoidable, it is glossed over with an extraordinary amount of euphemism. This is the case even in medical journals, where doctors are addressing one another rather than pregnant patients. Physicians refer to “screening and its sequelae.” Pregnancies are “terminated,” “selectively terminated,” or, most bewildering, “interrupted.” Parents who receive news of a fetal disorder are urged to “choose a reproductive option,” “decide the disposition of their pregnancy,” or, simply, “intervene.” In discussing abortion procedures, physicians refer to “permanent asystole” or “mechanical disruption of the fetus” rather than fetal death. The word “amniocentesis” often serves as a stand-in for testing-plus-abortion; one genetics textbook states, “If all mothers of thirty-five years and over had amniocentesis then this would reduce the incidence of chromosomal disease by 30 percent.” Many British physicians take recourse in acronyms, referring simply to “TOP””termination of pregnancy.
Much of this coyness can be explained by political expediency. A technical bulletin on screening issued by ACOG, a group that presumably would rather be identified with babies than abortion, never mentions the “A” word, but recommends that “supportive or therapeutic services appropriate to the decision should be made available.” The report of the 1983 President’s Commission on genetic screening is, for obvious political reasons, a masterpiece of doublespeak. When the report discusses screening for Tay-Sachs disease, abortion is nowhere mentioned but everywhere between the lines. Prenatal testing of the fetus, says the report, “has provided carrier couples with an option that did not exist previously. In the past, couples who had a child with Tay-Sachs disease often found the 25 percent risk of having another affected child to be unacceptable, and decided therefore not to have any more children. Prenatal screening for Tay-Sachs has meant the continuation of countless pregnancies and the conception of hundreds of infants who would otherwise not have been born.”
The Commission also refers to the inevitable tension between the “public health goals of reducing the incidence and impact of inherited disorders” and “the special place accorded to the right of individuals to obtain and use screening information as their personal values dictate, whether or not their decisions result in a reduction in genetic disease” (emphasis added). The only occasions where the Commission report actually uses the term “abortion” is when it wishes to capitalize on its pejorative sense; in its discussion of sex selection, the report straightforwardly condemns the use of prenatal diagnosis “to abort a fetus of the unwanted sex.”
While many pregnant women welcome the choices prenatal testing has given them, others are ambivalent, have misgivings, or have simply not given the matter much thought. Yet the pressures to be tested are powerful. The most obvious pressure comes from the context in which tests are offered. Studies show that even women who have reservations about screening find it difficult to decline tests when their obstetricians suggest them. In one survey, about a third of the women who had already agreed to be tested “had wondered if it was right to perform a kind of quality control of the fetus.”
In the doctor’s office and in the many popular books available on pregnancy and childbirth, there is an assumption that reasonable and enlightened women will naturally want to make use of new screening technologies. The 1983 President’s Commission on genetic screening is typical in describing prenatal testing and carrier screening (the testing of couples before conception to determine whether they carry a genetic defect) as enhancing a woman’s choices. “Genetic screening and counseling are medical procedures that may be chosen by an individual who desires information as an aid in making personal medical and reproductive choices,” it says. “Professionals should generally promote and protect patient choices to undergo genetic screening and counseling . . . . “
Politicians and pollsters have long known that the words “information” and “choice” are powerful ones for Americans”especially for women. Barbara Katz Rothman, a sociologist at Baruch College in New York, has observed that we are raised to welcome all offers of both: “If there is information to be had, and decisions to be made, the value lies in actively seeking the information and consciously making the decision. To do otherwise is to let things happen to you,’ not to take control of your life.’“ Women who reject screening are regarded as “turning away from the value of choice, and even more profoundly, turning away from the value of information.”
Doctors, however, don’t have to live with the anxiety generated by testing and the gathering of information; patients do. Yet physicians and women’s health advocates repeatedly insist that the best reason for women to undergo prenatal screening is for “the reassurance it almost always brings.” This is a strange assertion. Certainly, worrying is a natural part of any pregnancy: Can my body do all the things necessary to carry the baby to term? Will the baby be healthy? Will I be a good parent? Such free-floating concerns have always plagued women. But in the past few decades, the normal anxieties of pregnancy have been inflamed by a highly specific set of specters”specters prompted less by genuine health threats than by the promotion of certain tests.
Because there is a test for Down’s syndrome, for example, women over the age of thirty have been bombarded with articles about the risks of having a child with Down’s; many women can chant the statistics for each age category. To look at this situation from afar, one would assume that women today are at increased risk of giving birth to a child with Down’s, or that Down’s syndrome accounts for a majority of birth defects or, at least, a majority of cases of mental retardation. In fact, Down’s syndrome accounts for only a fraction of all birth defects (including mild retardation) and only a quarter of the cases of serious retardation, which can be caused by a number of unpredictable genetic factors as well as trauma during the birth process. Similarly, the other chromosomal abnormalities, fetal infections, neural-tube defects, and blood and metabolic disorders that can currently be diagnosed before birth do not begin to exhaust the universe of possible defects.
Women have been trained to concentrate their anxieties on Down’s syndrome for the simple reason that they are offered tests for it. But they are offered tests for Down’s, not because the risk is personally high for them, but because the public health sector has a powerful interest in reducing the number of citizens who may end up requiring government support. Major research efforts have therefore been concentrated on screening for Down’s, one of the few forms of mental retardation whose cause is known.
Displaced anxiety can lead to artificial peace of mind. In the current climate of testing it is all too easy for prospective parents to forget that illness can befall a baby at any time during pregnancy and delivery, or after birth, and that the majority of birth defects are undetectable and unpreventable. Yet, as obstetricians will be the first to admit, many women who receive a negative result on a prenatal test seem to feel that they are in the clear. This false sense of security can make an undiagnosed birth defect or subsequent childhood illness all the more difficult to handle.
Pressures to undergo testing are invariably followed by subtle pressures to abort in the event of a positive diagnosis. While prospective parents may have worked out what action they would take if the fetus is diagnosed with anencephaly or Down’s syndrome, they may be unprepared for ambiguous diagnoses, or diagnoses of milder conditions. Most parents do not realize that one in a hundred amniocentesis procedures (and an even higher proportion of CVS tests) will yield a combination of normal and abnormal cells that make predictions of any kind very difficult. Nor do most parents consider the possibility”present with any medical test”that test results may be switched or misinterpreted. And most parents are unfamiliar with conditions like sex-chromosome abnormalities, which are diagnosed in about one in 290 amniocenteses. Nearly all children born with a sex-chromosome abnormality will have a normal life span. Some may be infertile or require hormonal therapy; some may need special help with schooling or behavioral problems. (So, of course, may many “normal” children.) Yet in one study twenty-five out of forty fetuses so diagnosed were aborted.
Any momentous life change, whether desired or dreaded, seems overwhelming in the abstract. Yet most people do rise to these occasions. The incorporation of prenatal screening into childbearing, however, allows couples’ abstract fears and prejudices to override their natural instincts. Comparisons between the attitudes of parents contemplating having a disabled child with those who already have a child with a disability are revealing. Surveys of women undergoing amniocentesis have shown that 62 percent say they would abort for sex-chromosome abnormalities, and 57 percent for blindness or paralysis of the legs. Yet only 20 percent of parents who have children with cystic fibrosis would consider abortion for CF. Clearly, having a personal relationship with an afflicted individual can summon up a host of nurturing instincts that do not come into play in a theoretical deliberation. It is interesting to note that these same parents of children with CF would be far more willing to abort for disorders they had no personal experience with. A similar pattern has been reported in parents of children with Down’s syndrome.
The majority of genetic counselors on hand to advise parents during the testing process pride themselves on being “nondirective.” They see their goal as providing information and helping patients sort out their feelings. But Angus Clarke, a geneticist at the University of Wales College of Medicine, has become skeptical of such claims of neutrality. In an article examining the use of counseling in his field, he concluded that “an offer of prenatal diagnosis implies a recommendation to accept that offer, which in turn entails a tacit recommendation to terminate a pregnancy if it is found to show any abnormality. I believe that this sequence is present irrespective of the counselor’s wishes, thoughts, or feelings, because it arises from the social context rather than from the personalities involved . . . . “
Within the medical literature there is a clear assumption that counselors are there, in effect, to help patients through the difficult process of agreeing to be tested and agreeing to abort in the event of a diagnosed defect. A March of Dimes casebook on genetic counseling uses the phrase “nonroutine decision” to refer to a couple’s choice to continue a pregnancy after a diagnosis of fetal defect. A booklet Yale University Medical School’s prenatal testing unit hands out to couples who have just received a positive diagnosis treats as inevitable the grief that will accompany the decision to abort a defective fetus”and, by implication, as inevitable the fact that parents will choose to abort. “How do we describe the decision to actively end a pregnancy that often has been so joyously anticipated?” The booklet implies that parents should shield themselves from those who will simply “make moral judgments” and carefully likens the mourning process following an abortion after prenatal diagnosis to the loss of a child through miscarriage or accidental death.
But the fact is that parents are responsible for ending the pregnancy, and their reactions to the decision, and to the abortion itself, are all the more intense for that. The medical community has only recently turned its attention to the emotional issues surrounding abortion in these circumstances, and the results suggest that the experience is more traumatic than had been expected”almost always more traumatic than abortion in the event of an unwanted pregnancy.
Studies comparing first-trimester abortion following CVS with second-trimester abortion after amniocentesis show similar levels of grief. But abortions after amniocentesis are more taxing physically and more grueling emotionally. Late-second-trimester abortions usually consist of an injection of prostaglandin into the amniotic sac, followed by labor that takes anywhere from several hours to
more than twenty-four hours, culminating in delivery of the dead fetus. In an attempt to help parents come to terms with the loss, many hospitals encourage women to view or hold the fetus after delivery. A photo is often kept on file in case a woman who does not wish to see the fetus at the time of the abortion wishes to do so later on. A small number of women opt for a dilation and evacuation procedure, in which the fetus is surgically removed from the womb.
Researchers who have began to study the reaction of parents who abort for fetal defect seem surprised at the extent of emotional distress. One group of researchers reached what one would have thought would be an obvious conclusion”that “for most women the event had the psychological meaning of the loss of a wanted child.” In one of the largest studies of what are called the “psychosocial sequelae” of abortion after prenatal diagnosis, these researchers interviewed eighty-four women and many of their husbands two years after the event. They learned that more than 20 percent of the women still experienced grief and guilt that “interfered with their mental well-being.” Some of the younger women in the group had been having recurring panic attacks and nightmares. One man had been impotent since the abortion. Ten couples had separated at some point during the two years as a result of the stress the abortion placed on the relationship.
Nearly half the couples said that their behavior toward their children had become overprotective, anxious, or irritable. Two couples left their children for six months with relatives. Five men left the interview room “to hide their tears.” And thirteen couples refused even to participate in the study because the subject was too painful for them to discuss. The researchers observed that 40 percent of the women and 9 percent of the men displayed a “loss of moral self-esteem produced by the awareness of their own contribution to the pregnancy loss.” Although only 32 percent of the women practiced a religion, 82 percent “experienced a strong spiritual disturbance.” The researchers speculated that “55 percent of the women and 58 percent of the men were potentially at risk of prolonged or unresolved grief because they felt unable to voice their feelings.”
The survey concluded that, “while a second trimester termination of pregnancy for fetal abnormality may be physically relatively safe for the mother, it remains an emotionally traumatic, major life event for both father and mother.” Yet the researchers who arrived at this conclusion did not reassess prenatal screening in light of their findings. Instead, they simply criticized the “post-termination care” the couples received, and urged that those who abort under such circumstances receive more counseling: “Grief cannot be prevented but may be shortened if couples are given the right tools, in the form of skilled preparatory counseling, to come to terms with it.”
As prenatal screening becomes increasingly
routine, disability ceases to be viewed as a random misfortune. But even if a woman had all the reproductive choices in the world”whether to conceive, whether to undergo diagnostic testing, whether to treat the fetus, or whether to abort for a particular condition”she still would not be guaranteed a healthy child. When children are born with disabilities or suffer injuries in childhood, will parents steeped in a culture of screening regard them with resentment? The effect of this culture, Barbara Rothman has pointed out, is that conditionality, rather than acceptance, is built into parental love from the start. Screening for defects is a way of saying: “These are my standards. If you meet these standards of acceptability, then you are mine and I will love and accept you totally. After you pass this test.” Pediatrics expert Jeffrey Botkin agrees that screening may have a destructive effect on the parent-child relationship, noting that testing raises parents’ expectations of their children, rather than encouraging parents to recognize the uniqueness of each child.
Disability advocates and feminists interested in the social impact of reproductive policies have criticized society’s growing role in developing and enforcing quality-of-life standards. Even some feminists who are resolutely pro-choice have trouble with abortion for defect. As Harvard’s Ruth Hubbard has explained, “It is one thing to abort when we don’t want to be pregnant and quite another to want a baby, but to decide to abort this particular fetus we are carrying in hopes of coming up with a better’ one next time.” Disability groups and feminist supporters fear that when physicians encourage the abortion of fetuses with diseases or disabilities, they are fostering intolerance of the less-than-perfect people who are already born. Anecdotal evidence gives cause for concern: in one study of seventy-three parents-to-be undergoing prenatal screening, 30 percent said they thought screening might encourage negative attitudes toward the disabled; half thought that mothers of disabled children would be blamed for their failure to undergo screening or have abortions.
Angus Clarke has remarked on the poisonous effect of the double standard that governs prenatal screening. Physicians and policymakers, he notes, assume that abortion for sex selection is “tantamount to a declaration that females are of much less social value than are males. Society is not willing to make such a statement, which would have profound implications for how women are viewed in society, and also for how women view themselves.” Yet there are no restrictions on the patient’s autonomy to abort for any disability whatsoever. This, Clarke says, indicates the “low value that our society places upon those with genetic disorders and handicaps. We draw some moral lines for social but none for genetic termination of pregnancy.”
The President’s Commission on genetic screening bears this out. While endorsing testing for disorders and defects, the commission roundly condemns sex selection on the grounds that it is “incompatible with the attitude of virtually unconditional acceptance that developmental psychologists have found to be essential to successful parenting. For the good of all children, society’s efforts should go into promoting the acceptance of each individual”with his or her particular strengths and weaknesses”rather than reinforcing the negative attitudes that lead to rejection.”
Other criticisms of prenatal testing stress the procedure’s potential impact on the distribution of illness in society. The epidemiologist Abby Lippman has warned that since affluent people are more likely to avail themselves of testing and more likely to abort when presented with a positive or ambiguous diagnosis, the wealthier classes may be avoiding illnesses”such as Down’s syndrome and spina bifida”that up until now have always been randomly distributed. This demographic shift may leave the disabled without the lobbying clout so crucial to obtaining funding for research and treatment.
As screening becomes increasingly widespread and sophisticated, physicians, policymakers, and the courts will be forced to make judgments about what kind of life is worth living and what kinds of disabilities are too costly to society. Already, parents who undergo prenatal testing are finding that answering life-and-death questions is more difficult than they had imagined. How “normal” does a baby have to be to continue the pregnancy? Which is worse, a severe physical or slight mental handicap? Should one abort if there is a 30 percent chance that a genetic disease will be transmitted? Is it worth giving birth to a child who will die at the age of forty? Thirty? Twenty?
Prenatal testing has the potential to raise countless uncharted dilemmas. If parents who choose to abort in the case of a detected defect already have children, how do they explain the sudden disappearance of the pregnancy? Do they tell the children it was a miscarriage, or do they try to explain that the pregnancy was ended because the baby had an illness? Other, more peculiar, situations present themselves when mild or ambiguous disorders are diagnosed and parents choose not to abort. In the case of conditions that may affect growth, sexual development, or level of aggression, Rothman has noted, parents might find themselves locked into a certain perception of their children, always on the lookout for signs of abnormality. Perfectly normal childhood behavior will be scrutinized for manifestations of certain diseases. There is no way to know how this atmosphere might affect a child’s development and sense of self. As the ability to detect a wider range of nonfatal genetic conditions becomes possible, these sorts of challenges may become increasingly common.
Rothman has also described the daunting problem posed by the detection of late-onset disorders, such as Huntington’s disease, that do not manifest themselves until adulthood. If parents know the awful secret that their child probably will not live past a certain age, how will this knowledge affect their relationship with the child? Will they find themselves keeping an emotional distance to protect themselves from future pain? Will they, consciously or unconsciously, skimp on ways they invest in their child”whether in education or in encouragement of talents, hobbies, and other skills?
The decisions raised by prenatal testing are the stuff of moral philosophy. But they put real-life parents in inhumane situations. Moreover, they coarsen our very notions of what is involved in being a parent and what it means to be a responsible member of society. Through the gradual introduction of new forms of technology and testing, the medical establishment and the public health sector have been developing subtle quality-of-life standards and not-so-subtle ways of discouraging the birth of those who do not measure up. Debate on the issues raised by screening, when it does take place, has been confined to a small circle of professional ethicists, legal scholars, and feminists interested in reproductive policy.
Testing for birth defects, meanwhile, has crept into the life of nearly every woman of childbearing age, whether she avails herself of it or not. It is not too strong to say that childbearing has, in a profound sense, been transformed. This transformation is not the province of one interest group or another: it is not exclusively a medical issue, a legal issue, an economic issue, or a women’s issue. Like many revolutions in medicine and technology, prenatal testing took on a life of its own before its implications could be fully assessed. Like too many revolutions, its destructive social consequences may prove to be both far-reaching and long-lived.
Elizabeth Kristol has written for the New York Times, the Washington Post, The American Spectator, Commentary, First Things , and other publications.