The Faustian Cost of Prenatal Testing
So far as I know, this century's first "cost-based" proposal for the selective killing of "worthless" humans appeared in a monograph published in Leipzig, Germany, in 1920—more than a dozen years before Adolph Hitler came to power. In an essay entitled Permitting the Destruction of Unworthy Life, Dr. Karl Binding wrote:
Since they require extensive care, they occasion the development of a profession devoted to providing years and decades of care for absolutely valueless lives. . . . Again, I find no grounds, legally, socially, ethically or religiously—for not permitting the killing of these people, who are the fearsome counter image of true humanity.[1]
On June 1, 1995, Domenica Lawson was born in England with Down's syndrome. The fact that Domenica was born at all is significant, because, on both sides of the Atlantic, the 75-year-old brainchild of Dr. Binding is also alive and well. Indeed, it is being applied to "valueless" lives at the earliest possible point—in utero. A special prenatal-screening process is now widely available to expectant parents; it can detect many if not all genetic abnormalities in the fetus during the First few months of pregnancy. If such abnormalities are found, it is now "normal" for the would-have-been parents to have the defective fetus aborted. Needless to add, such "selective" abortions, including those based solely on the baby's gender, are perfectly legal in both the U.S. and Britain.
Little Domenica beat the odds; she was not aborted. But her birth ignited an often-bitter debate on the high cost of "unworthy" life. Her father is Dominic Lawson, a professed atheist who was then the editor of The Spectator, a highly-respected weekly opinion journal (it was England's 1995 Magazine of the Year—Lawson has since become editor of The Sunday Telegraph). He wrote an article celebrating Domenica's arrival and his abhorrence of the British health system's policy of providing "gratis, an abortion, if their tests show that the mother is expecting a Down's baby." (The article was reprinted in the Summer, 1995, issue of this journal.)
Lawson's story caused a great deal of comment, and many letters, some of which were printed in The Spectator. One, from a woman with severe spina bifida, thanked Lawson, adding ". . . occasionally there are reports of doctors who starve to death born babies with my degree of disability because they think we are 'better off dead'. . . in recognising [Domenica's] infinite value and worth you also recognised mine." A parent of a 23-year-old Down's man wrote poignantly of ". . . this extraordinary syndrome which deletes anger and malice, replacing them with humour, thoughtfulness and devotion to friend and family." She lovingly described her son, and others like him, as "stars in an increasingly materialistic world."[2]
But praise was by no means all Lawson got back. In a column headlined "A Duty to Choose Unselfishly" Claire Rayner of The Independent castigated the Lawsons for refusing prenatal tests—the burden of their decision and the "misery" of Domenica's life would now have to be shared by society. The Lawsons, wrote Rayner, would ultimately not be "paying the full price of their choice."[3]
Rayner's gratuitous indignation is typical of the "climate of cost-effectiveness" that surrounds the use of prenatal testing. Ostensibly, testing is intended to relieve parental fears about the viability and well-being of their unborn child, and to provide them—and their doctors—with advance information that could be of vital importance. But in practice such information is being used to pressure parents into the "choice" of abortion. Thus, if a fetus is found to be of poor biological or genetic quality, the infant itself is increasingly looked upon as having a negative economic and social net worth, since the estimated costs of its sustained care over the course of a lifetime are obviously far greater than the costs of aborting it. For screening programs to be cost-effective and useful for the entire population, proponents like Rayner argue, couples must use the information they receive to avoid—through abortion—the birth of a genetically-diseased infant.[4]
As prenatal technology increasingly makes possible a cost-efficient "thinning of the ranks," what will the future hold for children with congenital abnormalities? What impact will the pre-birth elimination of such individuals have on society? And, most importantly, what price do we pay when our focus on balancing the bottom line virtually ignores the sanctity of human life itself? Here in the U.S., where annual health-care costs now exceed 14% of the gross domestic product, the continuing debate is focused on ways and means to at least cut the steady growth of medical expenses. There is mounting pressure to ration treatment (it is already happening in Oregon) by cost-benefit analyses; in short, to spend our shrinking resources only on the curable. In such a strictly-utilitarian economy, unborn babies judged to be Incurable are easy targets.
Cost-benefit analysis is one thing when used for making decisions about the allocations of scarce or limited resources, but quite another when divorced from moral or political guidance and direction. It is true that, in today's economically-oriented society, cost-benefit analysis is inevitable. In the area of prenatal research, however, what remains to be seen is just what kind of principles will guide its use. Patrick Den, a professor of philosophy at dark University, has convincingly argued that cost-benefit analysis should in no instance be a morally-neutral enterprise. When cost is separated from ethics, Derr says, the moral foundations of a society are undermined, leading to a radical individualism and nihilism that can ultimately jeopardize the common life of our democracy. A theory of medicine that is predicated on a merely utilitarian vision of life will self-destruct. According to Derr, what is sometimes seen in neonatal applications is that the "technicians involved are doing calculations with value judgments that society and law would reject. Their science may be good, but what's wrong is that before attempting their science, they're foisting [upon society] value judgments that are not universally held."
A survey of recent medical literature would seem to confirm Derr's fears. The New England Journal of Medicine (April, 1994) includes research on the cost-benefits of prenatal testing. What is most disturbing is the emphasis that physicians and researchers are now placing on the economic valuation of human life. For instance, there is a discussion of the "considerable savings in diagnostic costs" that can be achieved with biochemical prenatal screening as opposed to the burdensome costs "of maintaining the . . . fetuses with Down's syndrome who are not identified prenatally."[5] An editorial entitled "Prenatal Diagnosis—Why Is 35 a Magic Number?" advocates aggressive prenatal testing, regardless of maternal age, to avoid unwanted problem births and emphasizes the economic, medical and societal costs of bringing abnormal [in this case, Down's] infants into the world:
Because limited resources now restrict the number of amniocenteses that can be performed and the number of couples who can be counseled, any restrictions should reflect the risk in an individual pregnancy, not just the woman's age, and should be based on an analysis that includes economic costs of short- and long-term medical, social, and home care for affected children, many of whom mature into physically and intellectually impaired adults.[6]
The editorial's co-author. Dr. Stephen G. Pauker of the New England Medical Center (at Tufts University School of Medicine), argues that, in the area of prenatal testing, cost may be only one among many factors, but "as available funds for everything diminish, it becomes more important to use whatever technology we have in significant ways." Pauker and many like-minded colleagues have adopted a zero-sum analysis: our resources aren't infinite; if more money is spent on X, we will have less money to spend on Y and Z. Pauker also asks:
Are there societies in this world today where people make choices [to terminate a pregnancy] based upon the sex of the child? Is a society that allows this any less moral if it bases such choices on economic factors? I can't say. It's a complicated choice. I'm not about to make a judgment. To make decisions, to label or to judge is simply to play on emotions and not logic.
According to the Alan Guttmacher Institute, about one percent of the 1.5 million abortions performed in the U.S. during 1992 occurred because the mother was advised of an abnormality, and an additional 12% were terminated because the mother feared that her fetus might have been harmed by medications or other conditions.
But what actually compels women to test and, subsequently, to have abortions in these cases? In one illuminating New York Times Op-Ed piece, Dr. Kenneth Prager, associate clinical professor of medicine at Columbia College of Physicians and Surgeons, blames the proliferation of prenatal testing on a kind of individualistic hedonism. In the United States, he writes, patients commonly "believe they have an unlimited right to the most expensive care, no matter how inappropriate the circumstances, and . . . wish to have their fears of illness allayed, no matter how remote its likelihood."[7] Expectant parents commonly fear the unknown. Prenatal technology can provide them with an abundance of information about their unborn child, but the science is admittedly imperfect and expensive. Some parents demand testing despite its cost and, should there be a problem with the accuracy of the prenatal report, there is now legal recourse. So-called "wrongful life" lawsuits, in which parents sue their physicians for withholding results of a genetic test, or for providing inaccurate reports that "resulted" in the unwanted birth, are increasing dramatically.
The fear of such malpractice claims actually propels the prenatal testing machine forward. For "Pro-choice" testing advocates, as well as litigation-wary physicians, the more parents know and the earlier they know it, the less the risk of a "costly" child being born. And there are other participants in this "industry" that have a vested interest in the in vitro guarantee of human physical perfection: without question, insurance companies— and insurance economics—are playing an increasing role in coercing families to terminate "problem" pregnancies. There are already reports of cases in which insurance carriers have attempted to deny coverage when prenatal abnormalities are detected. Dr. Robert Fink, a pulmonary specialist who treats cystic Fibrosis patients at the Children's National Medical Center in Washington, D.C., calls this "prenatal blackmail." The lifetime cost of care for a person with cystic fibrosis is now estimated at one million dollars. Ideally, so great a burden would be shared by familial and societal resources, as well as insurance. But when such huge costs collide with limited health-care resources in a nation that has legally and culturally sanctioned abortion, families and their "imperfect" unborn children potentially face great risk of exploitation.
Dr. Fink claims that one expectant Catholic couple in suburban Maryland, who already had a child with cystic fibrosis, were told by their health maintenance organization that their policy would pay for prenatal testing, but only if the couple agreed to abort if the test detected another fetus with cystic fibrosis. In a clearly-coercive move, the HMO implied that if the parents decided to bring an abnormal pregnancy to term, the infant would be denied benefits altogether. Says Fink: "It's illegal to cancel group policies, but not illegal to raise rates [to force families out of care]. What we have seen locally is that the insurance companies are typically represented by individual case managers who push intimidation, but know they will ultimately lose in court."
When reached for comment on the Maryland case, Harvie Raymond, director of managed-care operations for the Health Insurance Association of America, said: "I don't believe that that kind of logic is being followed by a majority of plans across the country. We, as an industry, follow the laws of the land." Although Raymond sees the Maryland case as an exception to "general" practice, he emphasizes that rising costs are a factor that must be dealt with, but Americans "are not willing to talk about economic rationing, and the fact that it might be needed." Raymond's comments will hardly ease the fear that market efficiency—as well as medical and scientific efficacy—are now more important than morality.[8]
Exactly what effect does the expansion of scientific research have on the growing exploitation of prenatal testing? One biotechnology insider, interviewed on the basis of anonymity, has this to say: "For most researchers, the general goal of prenatal genetic science is the understanding and prevention of illness on a genetic level, not the termination of unwanted, abnormal children." She also argues that cost-benefit analysis has always been an implicit factor in research, but that its presence has neither driven nor tainted the nobler aim of science. But is this always true? In the last decade, both in medical literature and in scientific laboratories, cost-benefit analysis has come to the forefront, and there can be little doubt, given all the financial calculations currently applied to testing, that many researchers see prenatal screening's main function to be the targeting and elimination of "unwanted" and/or "abnormal" life—surely an alarming trend. A sample of recently-funded research projects at two national health facilities—the Agency for Health Care Policy and Research (AHCPR), and the National Institute of Child Health and Human Development (a division of the National Institutes of Health)—confirms that cost-benefit analyses are indeed becoming routine in scientific methodology. For example, in 1994, the AHCPR provided grant and research funding toward the publication of "A Cost-Effectiveness Analysis of Amniocentesis and Chorionic Villus Sampling for Prenatal Genetic Testing." In this analysis, which among other things measures testing costs against the lifetime-care costs of undetected abnormalities, the "savings" are cold-bloodedly calculated at $103,329 and $111,184 per abnormal birth averted for amniocentesis and chorionic villus sampling, respectively."[9] Apparently no thought is given to parents who may not wish to "avert." Additional comments are also revealing:
It has been suggested by some that prenatal testing be extended to women aged 30 at their expected date of delivery. Although women in the lower age groups have lower frequencies of genetic abnormalities, they comprise a large fraction of the natality cohort. Therefore, strategies for testing these women could potentially avert larger numbers of abnormal births than would be averted under current strategies of testing at age 35.[10]
In short, such "cost-benefit" proposals for aggressive testing—aimed directly at the termination of prenatal life—demonstrate what happens when science is detached from morality. They also raise the question: Where are the millions needed to fund such "research" coming from? And, if much of it is U.S. government money, does it not put our government's imprimatur on the "results"—including lethal policies that many if not most taxpayers might strongly oppose?
The reality is that, despite all the talk of "cost-effectiveness," huge amounts of federal and private money are being spent on "prenatal screening" that targets defective infants. In 1995, the National Institute of Child Health and Human Development contributed over $7 million to projects concerned with prenatal diagnosis. Over $5 million went to the development of a perinatal research facility at Georgetown University, a Jesuit institution. A closer look at other NICH grants is also enlightening. The foundation for Blood Research in Scarborough, Maine, was awarded $368,502 for a project which involved a "feasibility analysis" to determine whether introducing "screening measurements for Down's syndrome can be justified in the first trimester, based on cost and medical efficacy."
Researchers at the University of South Alabama were awarded $97,815 to help identify and prevent developmental disorders, including learning disabilities, by studying the functioning of the fetus' autonomic nervous system (ANS). The project description includes this premise: "We believe that differences in intrinsic ANS activity and cardiac responsivity may ultimately help to identify the fetus-at risk for neurobehavioral abnormalities and hence facilitate the implementation of appropriate intervention protocols early in the course of development" [author's emphasis].[11] Exactly what "intervention" might be appropriate isn't spelled out, of course, but in our "therapeutic abortion" era it isn't hard to imagine what the "researchers" have in mind?
Without doubt, one can see in such examples the shift away from the traditionally-accepted medical role of providing compassionate care to those with defects towards a "philosophy" dominated by economic calculations of what the afflicted cost us. Another clear example of this trend can be seen in a study published in the summer 1994 issue of Inquiry, a health-economics journal: the California Birth Defects Monitoring Program, led by Dr. Norman J. Waitzman, measured the economic costs of the 18 leading birth defects in California. In the introduction, researchers assert that "little is known about birth defects' economic burden to society."[12] The study then goes on to provide comprehensive estimates of direct costs (medical, inpatient, outpatient, developmental services, special education) as well as indirect costs (i.e., mortality and morbidity) accumulated for each category of illness. Waitzman and his colleagues conclude as follows:
The cost estimates presented in this study provide a basis for assessing prevention strategies in cost-benefit and cost-effectiveness analyses. . . . Based on our estimates of societal costs, additional research on the etiology and epidemiology of birth defects may have a net economic benefit, if such research leads to new preventive strategies.[13]
Throughout the study, victims of spina bifida, heart defects, musculoskeletal defects, Down's syndrome, cerebral palsy and other abnormalities are treated with coldly economistic and chillingly dehumanizing language. For example, in predicting the future of these infants, researchers conclude that "Productivity is lost because of premature mortality and heightened morbidity."[14] The study consistently implies that economically unproductive lives are not worth saving—or living.
With such utilitarian financial calculations directing research, the U.S. may fast be approaching the advancement and implementation of programs similar to those already being carried out in Holland. To give just one example, Dutch researchers spent approximately $1.5 million on 2,816 comprehensive amniocenteses in a genetic screening/chromosomal analysis study, and only casual reference was given to the 48 healthy and 57 "defective fetuses" that were destroyed as a result of the tests. In its conclusion, the Dutch team triumphantly emphasized the fact that:
This (1.5 million) is in the same order of magnitude as the costs for taking care of one patient with Down's syndrome in a medical institution for a period of 60 years. Seen in the light of a cost-benefit analysis, the conclusion is obvious.[15]
Seen in another light, a different conclusion can be drawn. As we move further away from respect for the inviolability of human life towards a mere calculation of cost-effectiveness, contemporary society must examine whether its Utopian attempts to abolish suffering will bring with them the abolition of its soul as well.
The late Flannery O'Connor, generally regarded as among America's finest 20th century authors (and no stranger to suffering herself), wrote a too-little-known essay on suffering, "A Memoir of Mary Ann," which includes this penetrating insight: "One of the tendencies of our age is to use the suffering of children to discredit the goodness of God, and once you have discredited His goodness, you are done with Him. . . . In this popular pity, we mark our gain in sensibility and our loss in vision."[16] Our desire to "fix" the abnormalities that exist within the womb has led to the sanctioning of a process that allows the unchallenged obliteration of "problem" lives. The attempt to eliminate suffering by eliminating the lives of those who suffer may seem to some as being economically and scientifically "sensible" but, as O'Connor's paradigm points out, such attempts dramatically underscore a morally blind convergence of misguided compassion and utiltitarian economics.
The lost "vision" that O'Connor mourns can still be found, however. It exists within the insights of those extraordinary teachers, friends, parents, and siblings who have known children with birth defects. Our "society" may calibrate these children's worth in dollars, but those who love them measure their worth in the heart. Following are just two examples, taken from personal correspondence:
• Two years ago, at age 17, a cystic fibrosis patient named Michelle died after a life of enormous suffering. Her best friend, a senior in high school at the time, says this is retrospect: "I could not see my life without her once I met her. It wasn't only me she affected. It was everyone around her. Without her, the strength I [now] have would not be apparent."
• A student of Special Education, whose sister Jessie has "special needs," says "It is as if two sides of science are racing against one another. One side is searching for a cure and the other side is getting rid of the reasons why we are searching for cures. I cannot lie. Life without my sister would be a lot easier. But I don't remember anyone promising me an easy life."
Such accounts take us back to our beginning, to the birth of Domenica Lawson. In his account of her birth, Dominic Lawson wrote of seeing for the first time her extra fontanel, enlarged tongue, and asiatic eyes—the "stigmata of Down's syndrome." Lawson's description brings to mind a true story, worth mentioning here, about markings of a different kind.
Once, in the marketplace of Zanzibar (the fabled "spice island" off the east-African coast), a fish was found to have astonishing marks on its tail that read in Arabic "There is no God but God"—the excited crowd in the market bid and bargained heatedly over the fish, for such a unique phenomenon was considered to be of inestimable value. The scene is quite believable, certainly to believers: the mysterious, awesome markings made manifest truth that is indelibly imprinted upon every living thing—the unavoidable task of nature to proclaim the Divine.
As the pressure to kill the imperfect among us increases, and as a cost-benefit analysis of prenatal research divorced from any recognition of the sanctity of human life continues to grow in acceptance, the argument must time and again be made that, behind every ultrasound, amniocentesis and blood-sample test there is the real flesh, blood and bone of a child. A child who will someday celebrate, glorify, revere and reflect the eternal. Who among us can say that their lives, in whatever form they may take, will not somehow deliver back to us what is best in us?
We will not know their worth unless we hold them tenderly in our hands, regard the mystery of their afflicted shape, and—like the marks in Zanzibar—translate their shape into symbol, their symbol into words, and those words into commonly accepted truths about the benevolence of creation. For society to be able to do this, it must possess a language that is circumscribed by faith and rooted in the civic ethos of a principled democracy, one that respects all human life, accepts the unavoidable nature of suffering, and recognizes the existence of a moral authority outside—and beyond—itself.
It is not unlikely that, in just a matter of years, first-trimester prenatal screening using maternal blood samples could be perfected to detect the unborn asthmatic, the mentally ill, the diabetic, the autistic, and the dyslexic. What will come of these test results? Where will the gods of cost-efficiency lead us then? Who will defend the multitude of flawed lives that may be deemed too economically burdensome to exist?
Ultimately, we must ask ourselves: How many marked generations will, without vigilance, be silently thrown out to sea?
NOTES
1. Dr. Karl Binding (Essay 1) and Dr. Alfred Hoche (Essay II), Permitting the Destruction of Unworthy Life, trans. Walter E. Wright, Ph.D. and Patrick G. Derr, Ph.D., (Leipzig, Germany: Verlag von Felix Meiner, 1920).
2. The Spectator, 24 June 1995.
3. Paul Harris, "War of Words Born Out of Grief," Daily Mail, 4 July 1995, p. 14.
4. See Sally Lehrman, 'To Test—or Not to Test," San Francisco Sunday Examiner and Chronicle, 8 November 1992.
5. James E. Haddow et al„ "Reducing the Need for Amniocentesis in Women 35 Years of Age or Older with Serum Markers for Screening," The New England Journal of Medicine, 1994, vol. 330, no. 16, page 1118.
6. Stephen G. Pauker and Susan P. Pauker, "Prenatal Diagnosis—Why is 35 a Magic Number?," The New England Journal of Medicine, 1994, vol. 330, no. 16, page 1152.
7. Kenneth Prager, M.D., "Patient, Heal Thyself," The New York Times, 15 February 1994.
8. See Jeffrey Goldberg, "Free Market Economics, Old Testament Morality," The Washington Post, 23 October 1988.
9. Paul S. Heckerling and Marion S. Verp, "A Cost-Effectiveness Analysis of Amniocentesis and Chorionic Villus Sampling for Prenatal Genetic Testing," Medical Care, 1994, vol. 32, no. 8, pp. 863-880.
10. Ibid.
11. From a computer report entitled "NICHD Projects Concerned with Human Prenatal Diagnosis, FY'95 as of 7/27/95," supplied by the National Institute of Child Health and Human Development. One additional grant must be noted here. Case Western Reserve University was awarded $130,035 to examine the interaction between endurance exercise and the course and outcome of pregnancy. A group of "150 well-conditioned women"—75 runners and 75 aerobic dancers—are to be studied using the broad hypothesis that, above a threshold level, "endurance types of exercise have a negative . . . effect on multiple aspects of the reproductive process in female recreational endurance athletes." Methodologies are to include "underwater weighing and skinfold measurements" for assessing body composition, treadmill testing, and tracking of menstrual cycles. Researchers propose that the information obtained in this study will have a direct application to women considering pregnancy. So, fear not. Thanks to the hard work over at NICHD, ladies who wish to run and dance have been informed that they can do so, if they proceed with caution. Those who decide to bear children can do so, too, if they slow down a bit. And, should these mothers conveniently discover sometime in their First trimester that an ill-conditioned child grows within their womb, they presumably can adopt the appropriate interaction protocol and try again.
12. Norman J. Waitzman, Patrick S. Romano, and Richard M. Scheffler, "The Estimates of the Economic Costs of Birth Defects," Inquiry, 1994, vol. 31, pp. 188-205.
13. Ibid.
14. Ibid.
15. Nico J. Leschot, et al., "A Critical Analysis of 75 Therapeutic Abortions," 10 Early Human Development, 292, (1985).
16. Flannery O'Connor, Mystery and Manners, (New York: Farrar, Straus & Giroux, 1969), pp. 226-227.
Lori Brannigan Kelly is a free-lance writer (and mother of three) who now lives in Massachusetts; she was a White House staffer during the Reagan Administration.
This item 929 digitally provided courtesy of CatholicCulture.org
