(original draft of a paper previously written for a public health class)
"The principle that sustains compulsory vaccination is broad enough to cover the fallopian tubes. Three generations of imbeciles is enough."
- Chief Justice Holmes as quoted in (Wingerson 1998, p. 141)
Introduction
Eugenics as a public health policy has fallen into great disrepute since it's heyday in 1924, when Chief Justice Oliver Wendell Holmes upheld the constitutionality of forced sterilization and included this statement in his majority opinion. State-sponsored eugenic policies reached their horrifyingly logical conclusion in Nazi Germany, and the Holocaust that followed created a linkage between eugenics and Nazi genocide that persists to this very day. Conventional wisdom says that such a thing could - and must - never happen again. However, recent social and technological developments have given rise to what I term the "New Eugenics" - a form of eugenics rooted in prenatal genetic testing, a laissez-faire approach to genetic testing perpetuated by health and political authorities, and the fundamental desire of parents to have the best for their children.
The eugenic practices of the early 20th century were state-sponsored and sought to protect the nation from the perceived threat of "inferior" populations contaminating the national gene pool. These eugenic policies were defined in terms of a specific desired outcome - the "cleansing" of the gene pool (Silver 1997, p. 255). The racism and discrimination of the old-style eugenics is widely condemned now, and given the firestorm of controversy that has erupted surrounding a mildly eugenic book like The Bell Curve, it would seem that we have put eugenic policies behind us for good.
Advocates of prenatal genetic testing often argue firmly against the notion that the testing for genetic disorders is in any way related to the disreputable eugenics of the past. Other arguments cede the point that future developments in genetic engineering and gene therapy could lead us towards a rather benign form of eugenics in the future. As a result, they urge researchers to draw a line at changing the "germ line" of human genetic code and get around the specter of eugenics by claiming that the issue is far off and not relevant now (Caplan 1994, p. 2). Since the therapies to treat genetic defects in the womb are still years away from being developed, they argue that the current practices of prenatal genetic testing do not constitute a form of eugenics.
New Eugenics as genetic filter
In the end, the argument on both sides of the issue come down to how eugenics is defined and framed in the debate. The geneticists who argue that genetic testing is not related to eugenics rely on defining eugenics in terms of a policy designed to bring about a specific outcome - the "improvement" of the gene pool. Since there is no public eugenics policy, no forced genetic testing, and no coercion of any sort in the current practices of genetic testing, they would argue that the current practices have little to do with the ghastly eugenic programs of the past. I would argue that "eugenics" is more than just a set of coercive policies imposed on the reproductive practices of the public. Instead, I would define eugenics more broadly as a process - the attempt to limit the transmission of certain genes to the next generation through active human intervention.
The old eugenics attempted to cull out the "bad" genes of segments of the population through forced sterilization in an attempt to keep those genes from being passed on to another generation. Today, we have genetic testing, genetic screening, and voluntary abortions of fetuses that are found to have a profound genetic disorder. We do not need exotic technologies of gene therapy to cull out bad genes from being expressed in the population. Screening for genetic disorders and aborting the "diseased" fetus have much the same result - it keeps the genes we have labeled as "bad" from being passed on to another generation. After all, a screen is designed to keep out what is unwanted - a porch screen keeps out insects, and genetic screening is designed to keep out unwanted genes. This is at the core of the New Eugenics - weeding out the bad genes though the voluntary genetic testing and the voluntary abortion of a "defective" fetus. Instead of being a policy imposed by the state, it is created by the intensely personal decisions of the parents that have access to genetic testing technology.
Personal Autonomy Politics
The laissez-faire policy that the government has taken towards genetic testing is not particularly surprising considering how intensely personal and controversial reproductive issues have become in political life. Abortion, sex-education, and subsidized birth control have all been hotly debated between politicians of the left and the right. Paul Wolpe has argued that many bioethical issues have been resolved by the government using a strategy of personal autonomy as a form of regulation (Wolpe 1997, p. 165). By promoting and enhancing personal autonomy, policy makers can avoid making controversial and difficult policy decisions and instead place those tough decisions in the hands of individuals. Many issues are being addressed within this framework. Issues like abortion and the right to die have been resolved by policy makers by placing the ultimate decision in the hands of individuals. Even the HMO reform movement attempts to bring about change in the system by enhancing patient autonomy through such laws as the "Patients Bill of Rights."
This strategy of personal autonomy allows the state and it's political leaders from getting enmeshed in thorny moral and ethical issues with no clear solution. By making the patient an autonomous "consumer" of medicine, who gives informed consent on the procedures to be undertaken, the patient becomes an active agent in his own treatment, and the government is able to back away from responsibility for the outcome - because the ultimate decision has been placed in the hands of the individual (Wolpe 1997, p. 163). This would seem to be the case with the current policies regarding genetic testing. Most legislation involving genetic testing has revolved around the issues of medical privacy and the possibility of genetic discrimination by employers and insurers. Genetic testing itself has not been fully scrutinized by the policy makers, who have instead placed the choice of whether to test and what to do about the results in the hands of individual parents.
This strategy of personal autonomy regarding genetic testing is integrates well with the practices of the New Public Heath that have emerged in our neo-liberal political economy. The New Public Health places a strong emphasis on the individual conforming to the medical goals of the state voluntarily and without direct coercion (Peterson 1996 p. 64). Through the self-regulation of their behavior to minimize medical risk, individuals can act in accordance with the public heath goals of the authorities without needing direct intervention by the state. Several issues involving prenatal health have already been addressed in this fashion. There has been widespread education about the risks of drinking and smoking while pregnant - and most women voluntary comply with these public health suggestions, or face stigmatization by friends and associates who frown on such irresponsible behavior.
Testing for the Public Health
Unlike public health warnings about drinking and smoking while pregnant, genetic testing is not undertaken for the benefit of the health of the child. The most current genetic technology is still powerless to reverse a genetic defect in utero, and these genetic disorders rarely pose a threat to the heath of the mother. Discovery of a fetal defect often results in the abortion of the fetus, so the actual beneficiary of genetic testing as pure matter of health is rather unclear. However, there is some evidence that is the public treasury that is the direct beneficiary of a laissez-faire policy towards genetic testing. The State of California has encouraged women to be tested during their pregnancies for fetal neural tube defects. The success of the program is evaluated not in terms of the number of mothers given information about the status of their fetus, but instead in terms of the number of children with handicaps that are not born (Caplan 1994, p. 3).
Another troublesome example is prenatal genetic screening for Down's Syndrome. The condition poses no health risk to the mother, and the child affected by the syndrome can have as high as high a quality of life as a "normal" child. However, Down's syndrome patients make up to 15% of the institutionalized mentally retarded population that require very expensive long-term care that is paid for out of public funds (Kristol, 1996, p. 34).
Differing notions on what constitutes "disease" and "health" further complicate the issue and take it into very morally ambiguous grounds. The concept of "disease" is closely tied to the differences or abnormalities that are dis-valued by the individual or group (Caplan 1992, p. 132). Not all deviations from the norm are necessarily considered diseases however - most parents are delighted with children that are particularly attractive, or have a unique intellectual capacity. But when the deviation from the norm is unwanted and dis-valued, the condition can often fall into the category of disease. Genetic tests are being perfected for conditions like Albinism and Deafness - but the question remains whether these conditions are diseases that require prenatal medical intervention.
Both conditions are a deviation from the normal, yet the quality of life for those afflicted are quite high. We could be accurate to characterize both conditions not as diseases, but instead as abnormalities which causes some impairment. (Caplan 1992, p.134). If these conditions are not diseases, then why develop a test at all? Without a valid in utero treatment, and without the medical necessity for an abortion, what public health purpose is served by even designing such a test?
Shifting Definitions of Health
This sort of indiscriminate genetic testing for any sort of abnormality is a component of the New Eugenics. The technology to test for an increasing number of genetic conditions is seemingly unchecked by the laissez-faire policies towards genetic testing. With the state or the medical profession unwilling to stand in the way of a parent's right to know the genetic disposition of their child, the decision of whether to allow the fetus to come to term or not becomes a personal choice by the parents. Indiscriminate genetic testing in itself is not necessarily a eugenic process since it only brings knowledge of the genetic condition of the fetus to the attention of doctors and parents. The step required to make it a eugenic process is active intervention in order to stop the unwanted genes from being brought to term.
The nebulous and shifting definition of "health" plays an important role in propelling parents towards making the decision to make that intervention. One indication of the shifting definition of "health" is the expansive definition of environmental health adopted by the World Heath Organization in their First European Conference on Environment and Heath. The broad scope of their concerns ran the gamut from urban land use patterns, energy and transportation infrastructures, and even agricultural practices (Peterson 1996 pp. 135-136). This type of broad mandate takes us far away from the days when health was regarded as the absence of disease. Under this expansive definition of health, almost every sphere of activity is found to have a health implication, and can be a legitimate arena of investigation for the public health authorities.
On a more personal level, notions of health have moved away from the absence of disease and disability. Contemporary notions of heath have been transformed into a state in which our minds and bodies are flourishing and working at an optimal level. It is no longer enough to be disease free, under the risk-averse guidelines of the New Public Health we should be working to optimize our health - to become as healthy as possible. Health becomes a state in which bodies and minds can flourish, it is an ideal state which we should strive to achieve. Arthur Caplan argues:
Health is an ideal, not an average or a minimal threshold. When parents say they want a healthy child they may really mean they want a healthy child meaning they want their children to enjoy the best possible physical and mental functioning. They may want their yet-to-be-unborn children to function at optimal levels. (Caplan 1994, p, 5).
Using this broad sense of optimal health, some forms of parental nurturing can be interpreted as a desire to create a circumstance of optimal health for their child. Parents will often go the extra mile in order to place their children in exclusive private schools, pay for piano lessons, or enrich their life of their child in other ways. These sorts of actions are not the avoidance of disease, rather they are the pursuit of a state of optimized physical and mental health for their children.
Of course, parents trying to provide the best for their children is nothing particularly new. However, the technology of genetic testing now gives parents a way to insure that their child is born without any potential genetic defect that would jeopardize this optimal state of health that we are supposed to enjoy. In the absence of gene therapy treatments the parents face a stark choice: either bring the child with undesired genetic traits into the world, or to abort the child and try to have another child that is more in line with the parents expectations for their children. The idealized definition of "health" tilts the playing field in favor of aborting the fetus and trying again. Bringing a child with genetic defects to term means raising a child that will never be "healthy," a child that will never function in an optimal manner.
The Baby as Product
One final supporting factor for the New Eugenics are the changes in human reproduction that have been wrought by related reproductive technologies. With the technologies of in vitro fertilization and genetic testing, human reproduction is no longer limited to procreation by "amateurs." In a sense, a small but growing portion of the creation of babies has been moved into a quasi-industrial production process. Although it may seem far fetched, so are many of the cutting edge reproductive technologies that are available to interested parents.
First of all, conception through in vitro fertilization is a very capital intensive enterprise compared to conventional methods of procreation. Parents spend can spend tens of thousands of dollars in an attempt to conceive a child - and much of this money goes to pay for the labor of the highly skilled doctors that perform the difficult fertilization techniques. Currently the high costs of in vitro fertilization had limited the number of parents that have access to these advanced reproductive techniques, but as of 1994 over 150,000 in vitro babies had been born worldwide (Silver 1997, p. 80). Although this still remains a niche industry, future developments in the automation or the use of skilled non-medical technicians should pave they way to bring down the cost of these services and put them in reach or more parents.
The in vitro fertilization process divides conception and procreation into two different processes that can be separated in both space and time. With the cryogenic preservation of embryos, a fertilized egg can be easily shipped across the country, or sit in cold storage indefinitely to be thawed in a future time. When surrogate mothers are used for the gestation of the child, an elaborate network on contracts and agreements treat the unborn child as a commodity that is bought and sold as if it were a piece of merchandise in a conventional commercial transaction. The surrogates womb itself even becomes a bargainable commodity, able to be rented out to interested parents for a suitable price.
Finally, genetic testing imposes an industrial doctrine of quality control on the baby production process. Defects can be detected early in the "production process" and discarded if desired. Future developments in gene therapy will allow these defective unborn children to be "repaired" and be allowed to pass through the entire production process. However, the current practice of the simply removing "defective" fetuses from the production process rather crudely serves the purpose of maintaining a standard of quality for the infants that get produced. With in vitro fertilization giving rise to the notion of the child as an object of production - quality control through genetic testing is a logical extension that insures a quality product.
This production process for infants, while not as widespread as the practice of prenatal genetic testing, give parents a much more active role in the production of their child. In these cases of in vitro fertilization, the course of conception and pregnancy is far removed from the conventional natural process, and is instead opened up to allow direct human intervention in the process. For parents who naturally conceive, the actions of the in vitro parents has paved the way to take a more proactive approach to their "natural" pregnancy. The in vitro parents have blazed a trail by transforming pregnancy from a natural process to an activity where human intervention has become commonplace. When parents who conceive naturally are faced with deciding the fate of an unborn child that has been revealed to have a genetic defect, the decision is made marginally easier because of the notion of the infant as an object of production.
Unintended Consequences
The consequences of the New Eugenics are difficult to ascertain given the rapid rate of innovation in the biotech industry. The cloning of Dolly the sheep took everyone by surprise, and it not unreasonable to assume that further radical innovations in genetic engineering will be coming along soon. The technology of genetic testing provides a foundation for the New Eugenics that will only be enhanced by further breakthroughs, but for now the fundamental outlines of the New Eugenics are beginning to emerge. Through genetic testing and abortion, we have found a reliable way to stop the passage of unwanted genes to the next generation, and we have placed the authority of decision making in the charge of parents. The implications of the de facto policy of the New Eugenics are barely visible in the present, but are important to address.
Currently there is a bit of double standard regarding the termination of fetus with undesirable characteristics. We currently condemn those who would abort their fetus as a method of gender selection. Much has been written about the disparity of male to female births in China and the manner in which the Chinese government tacitly allows abortion for purpose of gender selection to occur. Yet the termination of pregnancy because the child has been determined to have a genetic disability is accepted, and even promoted by public health officials (Kristol 1996, p. 37). We are willing to draw a moral line for those who terminate a pregnancy for social reasons, but we are unwilling to make firm moral distinctions for those who terminate a pregnancy to stop the passage of a genetic defect. But in principle, both termination for gender and termination for disability involves the parental determination that a certain complex of genes is unacceptable. While women may he horrified by the prospect of unborn females being aborted solely because of their sex, a person managing to live a productive life with Cystic Fibrosis must feel similarly towards those who would deem his gene complex unfit to live.
The long-term effects of the New Eugenics policy may have serious consequences if prenatal genetic testing gains in popularity. Almost inevitably, widespread genetic testing will spread down from those with higher incomes and education levels and will eventually reach the middle and lower middle class. Widespread use of genetic testing could change the distribution of genetic diseases dramatically. The well-off would be able to use the technologies of genetic testing to have children free of the genetic diseases, while the poor would have little choice but to bring their children with genetic defects to term. Without the New Eugenics, genetic disease is roughly randomly distributed among the rich and poor, but with genetic disease evolving as a problem only for the poor, the lobbying clout of advocates for the disabled would be diminished and access to research funding for genetic diseases may be sharply reduced (Kristol 1996, p. 37). Whether or not government will step in to resolve such a potential inequality in the distribution of genetic disease is uncertain. While there may be a compelling case for the government to step in and address such an inequality, there is a good chance that such an intervention may not occur. We already tolerate a great deal of variation of in the social and economic circumstances that can surround any given child at birth. While there are some token redistributive programs, the socially and economically enriched lives of the children of the elite are largely ignored. We are unwilling to deny the elite opportunities for personal enrichment for their children, and it is arguable that the same would go for access to genetic screening technologies (Gilliot 1996, p. 59).
Widespread participation in the New Eugenics may also change our attitudes towards parents who decide to bring unborn children with genetic defects to term. Currently we condemn those who create a disability in others through their irresponsibility - like a drunk drivers who crosses the center line and disables another driver for life. With widespread genetic testing, mothers who knowingly bring a disabled child into the world could face condemnation because of her willful ignorance of the conventional wisdom on genetic testing and fetal selection. Christian Scientist parents that refuse medical treatment for their children are widely regarded as misguided child abusers despite the depth of their convictions. When the majority of parents use genetic testing to eliminate genetic defects in their children, the parents that hold out against such a policy may come to be blamed for not taking the step towards eliminating a preventable genetic defect.
Conclusion:
The New Eugenics has quietly been accepted as a helpful way for parents to address the genetic defects of their unborn child. Unlike the old Eugenics, which relied on the intervention of a coercive state to limit the transmission of undesirable genes, the New Eugenics instead relies on voluntary genetic testing and the voluntary termination of unborn children with diagnosed genetic defects. Technological advancements make genetic testing possible for an ever-widening range of genetic disorders, and the laissez-faire policy of the State towards genetic testing as set into motion the medical process that is the New Eugenics. The strategy of enhancing personal autonomy places individual choices in the hands of the parent, who act to stop the transmission of undesirable gene complexes without any need for State intervention. Shifting definitions of disease and health help to construct categories of disease and create justifications for fetal terminations. The transformation of baby making into a quasi-industrial process has turned babies into a commodity subject to the exchange and quality control of market processes. We have allowed the New Eugenics to become a de facto policy that works to restrict the transmission of certain genes. The New Eugenics bears watching as further technological developments move us closer to a future in which the entire range of human behaviors may be subject to modification or eradication.
References:
Caplan, Arthur (1994?). "What's Morally Wrong with Eugenics?" Center for Bioethics Virtual Library.
Caplan, Arthur. (1992). "If Gene Therapy is the Cure, What is the Disease?" In Annas, George & Elias, Sherman (eds.) Gene Mapping: using law and ethics as guides. Oxford: Oxford University Press.
Gilliot, John. (1996). "The Spectre of Eugenics." Living Marxism, January 1996, Issue 86.
Kristol, Elizabeth. (1996). "Picture Perfect: the politics of prenatal testing." First Things, April 1996, Number 62.
Peterson, Alan & Lupton, Deborah. (1996). The New Public Health: health and self in the age of risk. London: Sage Publications.
Silver, Lee M. (1997). Remaking Eden: how genetic engineering will transform the American family. New York: Avon Books.
Wingerson, Lois. (1998). Unnatural Selection: the promise and power of human gene research. New York: Bantam Books.
Wolpe, Paul. (1997). "The Triumph of Autonomy in American Bioethics: A sociological view." In DeVries, Raymond & Subedi, Janardan. (eds.) Bioethics and Society: sociological investigation of the enterprise of bioethics. New York: Prentice Hall.
Written by Mark Justman Copyright 1999 Posted 12/07/99 http://go.to/futureplex
