In 1967, the New Jersey Supreme Court rejected a “wrongful birth” claim and framed its decision in an eloquent affirmation of human dignity:
“The right to life is inalienable in our society. A court cannot say what defects should prevent an embryo from being allowed life such that the denial at the opportunity to terminate the existence of a defective child in embryo can support a cause of action ... A child need not be perfect to have a worthwhile life .... The sanctity of the single human life is the decisive factor in this issue in tort. Eugenic considerations are not controlling. We are not talking here about the breeding of prize cattle. It may have been easier for the mother and less expensive for the father to have terminated the life of their child while he was an embryo, but these alleged detriments cannot stand against the preciousness of the single human life to support a remedy in tort.”
In other words, the New Jersey Court affirmed that every single human life, whatever its circumstances or genetic condition, is worthy of existence, and that existence is to be prized over nonexistence as a matter of principle.
Just six years later, the U. S. Supreme Court would hand down the infamous ROE V. WADE decision, legalizing abortion. With that sweeping decision, everything changed. As attorney Jay Webber explains, “The ROE opinion completely reshaped legal views of the unborn, however, and soon thereafter the New Jersey Supremes were singing a different tune. In 1979, that court became the first to recognize the torts of wrongful birth. In light of ROE, the Court said that eugenic considerations in fact did control decisions regarding the birth of a child.”
Keep all that in mind when you look at Sunday's edition of THE NEW YORK TIMES MAGAZINE. In this issue, writer Elizabeth Weil addresses the issue of “wrongful birth” claims and the ethical confusion into which these issues are now debated. Beyond this, she acknowledges that this issue points, not only to confusion, but to significant danger.
She should know. As she recounts in her essay, Weil and her husband decided roughly two years ago to abort an unborn child when she discovered at 23 weeks of gestation that “our unborn son had contracted cytyomegalovirius [sic].” That disease, if contracted by the mother for the first time while she is pregnant and then passed along to her fetus can lead to severe birth defects. “Most likely our child would be deaf, blind and have serious mental retardation -- a doctor friend told me that this prognosis could make a child with Down look like a walk in the park -- but no one could tell us for sure what our unborn son's health would be like. What is more, no good studies existed because most of the women in the samples terminated before birth.” So what did Weil and her husband decide to do? “We did what seemed right at the time: we aborted.”
In her lengthy essay, Weil reviews many of the current issues related to wrongful birth and wrongful life claims. At the center of her essay is the Branca family and little A. J. Branca, born June 11, 1999. As Weil explains, Donna Branca was 31 when she became pregnant with A. J. Therefore, many of the prenatal tests that are customarily done on older mothers were not performed on Branca and her baby. Even after she experienced bleeding and other complications of her pregnancy, her doctors did not offer her tests in order to determine whether the baby might be carrying a genetic disease. “Looking back now, of course, it's easy to say I should have asked more questions or maybe been a little more concerned,” Branca told Weil.
Just before A. J. was born, however, further complications led to a visit to another medical facility, where an amniocentesis test indicated that A. J. had a gene duplication and a gene deletion on his fourth chromosome. After A. J.'s birth, it was determined that he had Wolf-Hirschhorn syndrome, which often includes mental retardation, an inability to speak, physical disfigurement, as well as seizures and other problems.
“What happened next -- the years in which the Brancas came to love A. J. deeply and also to file a multimillion-dollar lawsuit claiming that Donna Branca's obstetrician's poor care deprived her of the right to abort him -- sheds an uncomfortable light on contemporary expectations about childbearing and on how much control we believe we should have over the babies we give birth to.” An uncomfortable light indeed.
Weil describes and defines many of the most sensitive issues with skill and insight. “The technology of prenatal care has been shifting rapidly,” she reminds readers. “Our ethical responses to the information provided has been shifting as well. As in many other realms, from marriage and its definition to end-of-life issues, those ethics and standards are being hashed out in the courts, in one lawsuit after another. And what those cases are exposing is the relatively new belief that we should have a right to choose which babies come into the world.”
Weil's candor is refreshing and frightening. She is certainly right in pointing to “the relatively new belief” that human beings should have a right to choose which lives are worth living and, armed with prenatal tests and diagnoses, which babies will be allowed to be born.
Thus, we now find ourselves living in the very Brave New World we have been fearing for decades -- a world in which human life is often reduced to the cold calculus of genetic testing and to the murderous subjectivity of those who will decide which lives are worth living.
The “new belief” that Weil describes is, she argues, built upon two related assumptions, both of fairly recent vintage. “The first is the assumption that if we choose to take advantage of contemporary technology, major flaws in our fetus's health will be detected before birth. The second assumption, more controversial, is that we will be able to do something -- namely, end the pregnancy -- if those flaws suggest a parenting project we would rather not undertake.”
As recent reports have made clear, many are deciding not to take on the “parenting project” Weil describes. The dramatic decrease in the number of babies born with Down syndrome is but one sign of the fact that prenatal genetic testing is leading to the termination of an untold number of pregnancies -- but certainly numbering in many thousands.
This is surely only a hint of things to come, for the number and comprehensiveness of new genetic tests increases each year. As Weil reports, the number of prenatal genetic tests jumped from 100 to 1,000 just between 1993 and 2003. Yet, even as the number of these tests has increased exponentially, there are still no ethical guidelines about how such information should be used. The questions are not matters of mere abstract ethical theory.
“Should it be OK to terminate a deaf child? What about a blind one? How mentally retarded is too mentally retarded? What if the child will develop a serious disease, like Huntington's later in life? According to one reproductive legal scholar, Susan Crockin in Newton, Massachusetts, 'As reproductive genetics opens up new possibilities, we should expect to see more of these cases, and we should expect to see more novel issues.'“
Of course, when dealing with the issue of genetic testing on embryos or prenatal patients, there are no medical means of “curing” the problem. The only option, and the very option implied in the tests themselves, is killing the fetus.
“At this moment, we are fairly adept at finding chromosomal flaws and horribly inept at fixing them,” Weil acknowledges. “There is no chemical or surgical remedy if you find your child-to-be has cystic fibrosis, fragile X, Down syndrome, Tay-Sachs, and anencephaly -- the list goes on and on.” Weil cites professor Leon Kass, former chairman of President Bush's Council on Bioethics, to the effect that “the only way to cure the illness is to prevent the patient.”
The courts have responded to these questions with even more confusion. About half of all states allow some form of wrongful-birth lawsuits, but few allow wrongful life suits. The reason for this is not completely clear, but the courts have been especially wary to enter into the question of whether a living person should be able to claim that non-existence is preferable to existence. Yet, some of these same courts have been willing to allow parents to argue that they were denied a right to terminate their pregnancy, had they known of the genetic disease or abnormality with which their child would be afflicted. In her explanation of the complexities, Weil borrows the language of the New Jersey Court's 1967 decision. “We may not want to give birth to disabled children,” she acknowledges, “but at the same time we do not want to see ourselves as reproducing in a way that calls to mind prize cattle.”
Some medical ethicists see this as a direct threat to human dignity. Adrienne Asch, a professor at Yeshiva University in New York, argues that parents “want to think that they are open to loving whomever comes into their families, and they don't want to think that they aren't.” Nevertheless, Asch suggests that many parents really aren't willing to accept whatever child may result from a pregnancy. She argues that the very existence and medical context of these prenatal tests comes with the “automatic assumption” that, should the testing reveal a disability, the pregnancy should be terminated. As she curtly explains, prenatal testing “is not a medical procedure to promote the health of the fetus. It is a procedure to give prospective parents information to decide whether or not to eliminate a possible future life.”
David Wasserman, a bioethicist at the University of Maryland, agrees with Asch, arguing that these prenatal tests legitimate fears of persons with impairments.
Laurie Zoloth rejects that argument. Director of the Center for Bioethics, Science and Society at Northwestern University, Zoloth seems to argue that these tests should simply be welcomed as a way of producing fewer persons with genetic abnormalities. “When people worry about curing too many things, I'm always glad that bioethics wasn't around when people were thinking about infectious diseases or polio or yellow fever,” she retorts. Of course, this argument is both dishonest and disingenuous. Those infectious diseases were killing and afflicting living persons, and the scientists who were seeking to cure those diseases were attempting to save lives, not to terminate lives considered to be unworthy of living. Weil commendably describes the struggle of the Branca family to love A. J. and take care of his needs. They did sue the doctors involved in her pregnancy, and won an undisclosed multimillion dollar settlement. That settlement allows A. J. to receive the very best medical care, but it was won on the basis of an argument that the Brancas would have aborted A. J. had they known about his afflictions in time. There can be no doubt that they love him dearly, and give themselves sacrificially to his care. But what are we to make of the argument that they would have aborted the pregnancy, had they been armed with sufficient information at just the right time?
Weil's argument also comes with other fascinating information. For one thing, she cites studies indicating that many of the tests intended to reveal genetic abnormalities are themselves suspect. In one major study, embryos were seen to be healthier as development proceeded. In other words, some embryos claimed to be defective turned out not to be as defective as thought -- and perhaps not defective at all.
As with so many other contentious issues, the questions of wrongful birth and wrongful life are now being adjudicated in the courts, where arguments about parental rights are pitting the interests of parents over against the interests of their unborn children.
“An unintended and particularly disconcerting consequence of all these new reproductive lawsuits is that they may bias the medical establishment toward termination, and some argue that such a bias already exists,” Weil acknowledges. The new field of “genetic counseling” adds yet another dimension of complication to the issue, with many genetic counselors evidently steering patients toward “starting again with a clean slate.”
Elizabeth Weil's essay is itself an important marker in the nation's debate over human dignity. Are all lives worth living? Elizabeth Weil and her husband decided to abort their unborn child, rather than to face the genetic complications that child was diagnosed as carrying. She expresses continuing confidence that they made the right decision. Still, the fact that she is the author of this essay indicates that questions remain, reaching even to the deepest levels of her own moral decision-making.
When any life is deemed to be unworthy of living, every single human life is cheapened, discounted, and threatened. We are living in an age increasingly without moral rules -- an age in which choices about life and death are now commonly made with specific reference to what kind of child we would welcome, and what quality of life we will accept and protect. The Christian affirmation must be that every single life is worthy of living -- EVERY life is worthy of our protection, our care, and our welcome. No one should ever discount the difficulties of dealing with children who are born with severe genetic abnormalities or serious diseases. Most of us, within our extended families or circle of friends, are intimately familiar with just how excruciating many of these situations can be. Nevertheless, these are the very same issues we will all face in terms of issues at the end of life, and at many points between birth and death.
The eugenic temptation is, in this modern age of advanced medical technologies, always too close at hand. If we do not learn to resist it, human dignity will soon rest in the dustbin.
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