Eugenics: II. Ethical Issues

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II. ETHICAL ISSUES

To what extent are there continuities, parallels, and trajectories between past eugenic ideas and practices, and current and pending developments with genetic testing and screening, prospective gene therapies, and the increasing utilization of sperm banks and egg donations? To begin to answer these questions, it is imperative to distinguish between statesanctioned eugenic programs on the one hand, and private, individualized, personal decisions that are socially patterned, on the other. In the former case eugenic goals are usually explicitly articulated, and thus easy to identify, examine, and oppose or support. In the latter the eugenic implications are often unarticulated and subterranean—only exposed by a review of statistical patterns of what are otherwise perceived as individual choices. In matters of public policy and market choices, emphasis upon individual intent can camouflage the collective eugenic force of personal decision-making.

One heuristically useful attempt to distinguish between different kinds of contemporary eugenic forms can be found in Philip Kitcher's The Lives to Come (1996). Kitcher makes a distinction between laissez-faire eugenics, a hands-off approach that presumes that everyone will make their own individual choices—and a utopian eugenics, where as a matter of public policy there is an attempt to make available to all sectors of a society the information and technology to make those choices. While no public policy can ever deliver such information and technology evenly across all sectors, this provides an analytic device for assessing the degree of success of such an attempted distribution. The major difficulty surfaces with an empirical problem generated by the molecular genetic revolution itself, the fracture of the public health consensus of what constitutes the public good. Allen Buchanan and his associates, in From Chance to Choice (2000), argue that an assessment of the consequences for the general public good are vital to a discussion of the treatment/enhancement distinction. Before 1960 it was possible to achieve consensus that the public good was well-served by an elimination or mitigation of such diseases as smallpox, cholera, tuberculosis, yellow fever, typhoid, and sexually transmitted diseases. However, with the discovery that genetic disorders are located in risk populations that do not place the general population at risk, a new set of issues and new kinds of eugenic concerns have been generated regarding who has control over genetic screening and testing.

While it is true that individuals make choices, they do so in a social and economic context that can be demonstrably coercive. While relatively obvious when looking at other societies, it is less understood when examining one's own—substantially obscured because individual choice is deeply embedded in the taken-for-granted assumptions about decision-making. For example, long before the advent of prenatal detection technologies, preference for a male child in India and China was so great that a notable fraction of the population practiced infanticide of newborn females. While sex selection does not qualify as a eugenic strategy (unless the purpose is to prevent a gender-linked disorder), the practice in India and China does illustrate how and why a focus on individual choice can obscure the dramatically collective aspect of socially patterned individual choices.

Once technologies for prenatal determination of sex became available, the quest for disclosure of the sex of the fetus took a momentous turn for public policy in India. In 1971 India passed the Medical Termination of Pregnancy Act, which stipulates that a woman can be given an abortion only if there is a life-threatening situation, or grave injury to her physical or mental health. Amniocentesis use began in India in 1974, but there were early reports that the test was being used less to detect birth defects than to determine the sex of the fetus. In August 1994 the Indian Parliament passed a new law that stiffened the penalties for screening the fetus to determine the sex. However, there was a large loophole in the law that made it practically unenforceable—and the practice has continued at such a high rate that in 1994 New York Times reported that Haryana, a populous northern state, had an astonishingly low sex ratio of 874 females to every 1,000 males.

Individual Decision and Unexamined Group Patterns

It should be clear from the above examples of sex selection preferences in India that what appear to be individual familial choices may often be better understood as empirical social patterns reflective of the social and cultural hegemony. For example, in early 1994, Nature published "China's Misconception of Eugenics," an article that portrayed the Chinese government's policy of trying to prohibit couples with certain diseases from procreating as having a distinctively distasteful eugenic quality. While the article was forthright in denouncing the use of state power as the vehicle for discouraging procreation, it implied that a personalistic and individualistic decision to interrupt a pregnancy. Health Minister for China, Chen Minzhang, announced the plan to enforce a new law that would not only prohibit screening of the fetus for sex determination, but also ban marriages for people "diagnosed with diseases that may totally or partially deprive the victim of the ability to live independently, that are highly possible to recur in generations to come and that are medically considered inappropriate for reproduction"—as reported in the New York Times on November 14, 1993 in an article titled "China to Ban Sex-Screening of Fetuses."

The logical and empirical extension of the technology can be made explicit: Once it is possible to determine in time for the termination of a pregnancy whether the fetus has a condition that is regarded as a defect, who is entitled to make the decision about carrying to full term, or aborting? As noted, this should not be seen as a simple binary matter of voluntarism versus state power. There is considerable evidence to support the observation that what are characterized as personal or individual decisions in Western societies are upon closer inspection (just as with sex selection in India) actually very remarkably socially patterned.

In an influential treatise on reproductive choice titled Children of Choice, John Robertson acknowledged that social and economic constraints such as access to employment, housing and child care might play a role in the decision to have a child. However, the overarching theme, to which he returns again and again, is that reproduction "is first and foremost an individual interest" (p. 22). Because this is not reducible to an either/or formulation, it should be clearer why a continuum is a better analytic device for arraying an understanding of strategies and options—from individual choice to embedded but powerful social pressures (stigma and ridicule)—and from economic pressures (fear of loss of health insurance, or even of inability to obtain such insurance), and only then to the coercive power of the state to penalize.

When framed as individual choice, debate about a reproductive choice is set into the arena of individual rights: to have a child or not, then to have a male or female child, to have a child with Down Syndrome, cleft palate, or to choose to produce a clone. Such discussions of individual rights are typically de-contextualized from systemic concerns such as affordability. But amniocentesis is a relatively expensive procedure for the poor. The state often provides assistance to women seeking amniocentesis. In the 1980s California's Department of Maternal and Child Health noted with alarm that primarily wealthier women were getting state support for amniocentesis. Mindful of the state's eugenic history, officials embarked upon a program to try to get poorer women to accept the service. However, because the poor tend to have their children at an early age, this has become moot as a visible issue in the eugenics debate.

Continuity and Persistence of Eugenic Thought and Goals

During a time of rapid social change in which there are disruptions of the established order and the attendant challenges to authority and tradition, there is a special appeal of genetic explanations and eugenic solutions to the most privileged strata of society. The power of the state to control its population can be awesome, and thus when the state puts forward eugenic programs in a post-holocaust world, critics are well prepared to react with revulsion. The government of Singapore came under fire during the 1990s for its program to reward middle-class and wealthy families for having more children, while actively discouraging the poor from having large families. Far less attention has been given to the fact that 30,000 babies have been produced by sperm banks and egg donations in the United Kingdom alone, from people who are literally choosing what they consider to be better human stock (Maranto; Hill).

The industrial revolution and rapid urbanization wreaked havoc with traditional life and traditional social roles in both nineteenth-century Europe and the United States. Extended kinship systems that had been valued as an economic advantage on farmlands were often inverted and became economic liabilities when those families were forced off the land and moved to the teeming cities. Unemployment, homelessness, mental illness and a host of other social problems seemed to especially victimize the poor, whose visibility if not sheer numbers dominated the public sphere of urban life.

Cholera, yellow fever, typhoid, and tuberculosis were the scourge of city dwellers, and once again, the poor were the most likely victims. But as Sylvia Tesh noted in Hidden Arguments (1988), the poor were also the most likely to be blamed for causing the problems, typically characterized as living in unclean conditions. Hygiene came first as both an explanation for the better fortunes of the privileged and middle classes, and later—as a challenge to the poor.

As the wealthier families began to have fewer children, and to have the resources to hire the poor as servants to help them clean up—some observers began to notice what they thought was a disturbing pattern. The more well-to-do members of society were procreating less, while the poor were still having very large families. The dark Malthusian prediction about a population explosion took a particularly elitist turn. If people are to learn anything from the past, it is imperative to have a more complete understanding of the appeal and popularity of eugenics and why it was compelling to the full range of thinkers of all political persuasions at the beginning of the twentieth century. Very much like its sister concept hygiene—there was a strong association between cleanliness and order, progress and eugenics.

Just as hygiene was seen as the normal value of cleanliness to which all should aspire, eugenics was widely accepted and actively promoted by the major public figures of the period. University presidents, medical doctors, judges, academic scholars, writers, intellectuals, political figures on both the left and right of the political spectrum—all espoused the idea that the betterment of humankind would result from the practices and techniques that would prevent the procreation of imbeciles and mental retards and criminals and prostitutes and homosexuals and alcoholics and gamblers.

Contemporary Echoes of a Eugenic Past: The Genetic Screen

Genetic screening is one of the outgrowths of health screening for a number of public health problems, most notably tuberculosis. But unlike tuberculosis, genetic disorders tend to cluster in populations in which there have been centuries of in-breeding, because of cultural endogamy rules (who can marry whom), and/or because of long-term geographical residence of a population in which there has not been much physical mobility. In both circumstances, genes that cause diseases cluster in these populations, making those who are part of those populations at greater risk. Examples include cystic fibrosis, a disease affecting the lung's ability to accumulate liquids, primarily affecting persons of North-European descent; beta-thalassemia, a blood disease affecting persons living in the Mediterranean area; and sickle-cell anemia, a blood disorder primarily affecting persons with ancestors from West Africa, and in some areas of the Mediterranean.

In the last two decades of the twentieth century, many states began to offer postnatal genetic screening of all newborns. If the screen detects a high level of a particular chemical (alpha-feta protein) on the first go-round, the woman is offered a second test to determine if the fetus is likely to have anencephaly, which can produce a serious neural tube defect. In the most literal sense, to screen something means to prevent that something from getting past the screen. Thus, whether explicitly or implicitly, the institutionalization of genetic screening programs contains a strong residue of the old image of cleaning or purifying the gene pool. The social aspect of the eugenic implication is disguised by its being offered to individual women, or individual families. Thus the specter of state-sponsored screening of a particular group is diffused and obscured. However, as noted above, since genetic diseases tend to cluster in certain ethnic and racial groupings, individual decision-making (imposed or presumed) cannot mitigate the fact of systematically different outcomes for different groups.

Getting rid of bad babies with genetic defects is only half of the eugenic equation. There is also the idea of a positive eugenics, in which there is the active recruitment of some to procreate and selectively breed to increase some human trait or characteristic that is considered positive. Singapore actively encourages and rewards its wealthy and middle-class citizens to have more children. That is the group-approach to positive eugenics. On the individual level, contemporary residues of eugenic thinking can be seen in the emergence and increasing use of sperm banks with sperm donated by medical students, athletes, and Nobel laureates; the much higher cost of ova from young women from exclusive private colleges; and the exorbitant pricing of the ova from supermodels, which are offered on a website. Given a choice, there is evidence that some people will try to add a bit of height to their offspring with a growth hormone. Each of these developments indicates a lingering of a eugenic past.

Population/Group Taxonomy and the Relevance to Debates on Germ Line Intervention

The current discussions and debates about whether we should engage or support research that might alter the germ line rarely address the systematically eugenic potential that is a possible outcome. Germline is the term used to describe genetic changes that would influence inheritance across the generations, and is distinguished from genetic interventions that alter only the particular person undergoing gene therapy. Because bioethicists do not tend to formulate ethical concerns along dimensions of group stratification or access to political power on the part of groups of individuals, the discussion about the ethics of germ line intervention for group differentiation and social stratification is rare. An increased understanding of human genetics will enable the sorting of groups at higher and lower risk for certain diseases even more systematically than what was noted above.

If technology permitted entry into the germ line to eliminate either cystic fibrosis or sickle-cell anemia in an individual, that individual (or parent or guardian acting in behalf of that individual) might well make the individual choice. But a different order of ethical concern surfaces if one thinks about this more at the social and political level and less at the individual level. Zuni Indians are more likely to have cystic fibrosis than are persons of European ancestry, albeit a different mutation for cystic fibrosis than Caucasians. Yet the genetic test for cystic fibrosis is aimed at the Delta F508, the mutation most likely to be found in those of North-European ancestry. Quite simply, this is because genetic disease research is most likely to be aimed at those diseases that have the most politically powerful constituencies and/or for which there is a strong profit motive in the biotechnology industry. With more research dollars going into the Delta F508, than into the mutation which appears more frequently among the Zuni, individual Caucasians may come to believe that they are making an individual decision about altering the familial germ line. Stepping back to another level of analysis, social, political, and economic engines are driving molecular biology down certain research corridors of a particular group's genetic disorder and not others, and these have little to do with individual choice at the user end.

Parallel Massive Social Displacements: Late-Ninteenth and Late-Twentieth Centuries

Just as the twin shifts from agrarian to industrial and rural to urban dominated the shifting social demography of the late-nineteenth century in Europe and the United States, so the shift from industrial to service (or tertiary) and from urban to suburban dominated shifting social demography of the late-twentieth century. The United States has been in the vanguard of this development, and the massive economic displacement of African-American urban youth is the context for a renewed conception of biological thinking about social issues. At the beginning of the twenty-first century, the United States is heading down a subtly parallel road entertaining the connection between genes and social outcomes. This is being played out on a stage with converging preoccupations and tangled webs that interlace youth unemployment, crime and violence, race, and genetic explanations.

There is direct link between de-industrialization, youth unemployment, and ethnic or racial or immigrant minority status in the United States. In 1954 black and white youth unemployment rates in the United States were equal, with blacks actually having a slightly higher rate of employment in the age group from 16 to 19. By 1982 the black unemployment rate had nearly quadrupled in this age group, while the white rate had increased only marginally (Kasarda). Just as unemployment rates among African-American youth were skyrocketing during these three decades, so were their incarceration rates. This provides the context in which to review and interpret the clear pattern of the recent historical evolution of general prison incarceration rates by race. In the last half of the twentieth century, the incarceration rate of African Americans in relation to whites has gone up in a striking manner. In 1933 blacks were incarcerated at a rate approximately three times that of whites. By 1970 it was six times; and in 1995 it was seven times that of whites.

Genetic studies of criminality have a heavy dependency on incarcerated populations. Thus, for example, one of the more controversial issues in the genetics of crime is whether males with the extra Y chromosome, or XYY males, are more likely to be found in prisons than are XY males. The first major study suggesting a genetic link came from Edinburgh, Scotland. In 1965 Patricia Jacobs and her colleagues reported that while all of the 197 males in this account of prison hospital inmates were described as dangerously violent, seven had the XYY karotype. These seven males constituted about 3.5 per cent of the total. But since it was estimated that only about 1.3 per cent of all males has the XYY chromosomal make-up, the authors posited that the extra Y significantly increased one's chances of being incarcerated. Ever since a controversy has raged as to the meaning of these findings and the methodology that produced them. The claim for a genetic link to crime is based entirely upon studies of incarcerated populations.

Yet, incarceration rates are a function of a full range of criminal justice decisions, a fact which research has long shown to be a function of social, economic and political factors (Cole; Mauer; Miller; Currie). At the beginning of the twenty-first century, forensic sciences are attempting to use DNA markers to identify ethnic affiliation estimations of suspects in criminal investigations (Lowe et al.; Shriver et al.). Just as health and hygiene were the vanguard for the late-nineteenth century screen for the unfit, so the genetic screen was first a health screen. However, the shift in use and focus to forensic science has already begun. The national DNA database, CODIS (acronym for COmbined DNA Identification System) contained, as of January 2000, genetic profiles of 210,000 convicts. It is coordinated by the Federal Bureau of Investigation (FBI), and all fifty states contribute to the databank.

The states are the primary venues for the prosecution of violations of the criminal law, and their autonomy has generated considerable variation in the use of DNA databanks and storage. Even as late as the mid-1980s, most states were only collecting DNA samples from sexual offenders. The times have changed quite rapidly.There has been active change in the inter-linking of state databases, and states are uploading an average of 3,000 offender profiles every month. Computer technology is increasingly efficient and extraordinarily fast, and it requires only 500 microseconds to search a database of 100,000 profiles.

As the United States increases the numbers of profiles in the national database, there will be researchers proposing to provide genetic profiles of specific offender populations. Twenty states authorize the use of databanks for research on forensic techniques. Based on the statutory language in several of those states, this could easily mean assaying genes or loci that contain predictive information (Kimmelman). The program of research for CODIS is increasing exponentially on an annual basis, and this data base is sitting there waiting to be tapped by researchers looking for violence genes—as evidenced by the spate of national interest over the monoamine oxidase A (MAOA) gene. In the latter part of 2002, Caspi and his associates published an article in Science that cemented the relationship between behavioral and molecular genetics. The authors claimed to have produced findings that a functional polymorphism in the MAOA gene affects the impact of early childhood maltreatment on the development of antisocial and violent behavior. The policy implications of the research were strongly suggested in the conclusions, and re-ignite an old debate about the prospects and dangers of early identification of children who are thought to be at risk for violent or antisocial behavior. As in the earlier forms of eugenics, early identification always carries with it the appendage of both treatment and prevention.

Conclusion

Eugenic thought, practice, and advocacy are best understood as existing along a continuum with degrees of activity. It is therefore misleading and obscuring the complexity of the range of reproductive options to suggest that either a society does or does not have eugenic practices. Most significantly the social setting in which eugenics flourishes or declines is as important as the knowledge base in genetics and biology. The oft cited post-World War II defeat of eugenic thought is actually therefore better framed as its mitigation, its submersion, muting, or transmogrification. These changes came about more because of the defeat of the Nazis, and less because of advances in scientific knowledge of the genetics of race. As early as the 1930s, German and U.S. scientists had conclusive evidence that the ABO blood system did not track along racial or ethnic lines, but this knowledge did not inhibit some of the most vicious racist eugenic practices ever promulgated and perpetrated.

The social and economic setting in the technologically developed part of the world since the mid-1980s is propitious for a strong resurgence of eugenic thinking and advocacy, similar in degree to the social transformations of early-twentieth century Europe and the United States. The decline of the welfare state, the increasing gap between rich and poor, and the erosion of safety nets for the poorest members of a society have set the stage. This is accompanied by transnational migrations of laborers in the increasingly global labor markets of major post-industrial nations. The entry and consignment of these workers to the bottom quartile of the economic order, with the highest rates of poverty, disease, and recorded crime and violence will fuel the re-insurgence of attempts to explain their behavior. The new forms of eugenic insurgency will be disguised, muted, and made more palpable as: (a) the neutral requirements of forensic techniques of ethnic estimation; (b) the convergence of molecular and behavioral genetics in explanations of violent and antisocial behavior; and (c) the over-arching framework of individual choice regarding reproductive options, whether to prevent the birth of a child with a genetic defect, or in the use of new technologies to enhance the prospect of the fetus for competitive advantage.

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BIBLIOGRAPHY

Adams, M. 1990. "Towards a Comparative History of Eugenics." In The Wellborn Science. Eugenics in German, France, Brazil, and Russia, ed. M. Adams. New York and Oxford: Oxford University Press.

Allen, Garland. 1986. "The Eugenics Record Office at Cold Spring Harbour, 1910–1940: An Essay in Institutional History." Osiris 2nd series, (2) 225–264.

Broberg, G., and Roll-Hansen, N., eds. 1996. Eugenics and the Welfare State: Sterilization Policy in Denmark, Sweden, Norway, and Finland. East Lansing: Michigan State University Press.

Buchanan, Allen; Brock, Dan W.; Daniels, Norman; and Wikler, Daniel. 2000. From Chance to Choice: Genetics and Justice. Cambridge, Eng.: Cambridge University Press.

Caspi, A.; McClay, J.; Moffitt, T. E.; et al. 2002. "Role of Genotype in the Cycle of Violence in Maltreated Children." Science 297: 851–854.

"China's Misconception of Eugenics." 1994. Nature 367: 1.

Cole, David. 1999. No Equal Justice: Race and Class in the American Criminal Justice System. New York: New Press.

Currie, Elliott. 1985. Confronting Crime: An American Challenge. New York: Pantheon.

Duster, Troy. 1990. Backdoor to Eugenics. New York and London: Routledge.

Duster, Troy. 1995. "Post-Industrialism and Youth Unemployment." In Poverty, Inequality and the Future of Social Policy: Western States in the New World Order. New York: Russell Sage.

Haller, Mark. 1963. Eugenics: Hereditarian Attitudes in American Thought. New Brunswick, NJ: Rutgers University Press.

Jacobs, P.; Brunton, A. M.; Melville, M.; et al. 1965. "Aggressive Behavior, Mental Subnormality, and the XYY Male." Nature 208: 1351–1352.

Juengst, Eric T. 1998. "Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous and Practically Useless." Kennedy Institute of Ethics. 8: 183–200.

Kasarda, John D. 1983. "Caught in the Web of Change." Society November: 41–47.

Kevles, Daniel J. 1985. In the Name of Eugenics: Genetics and the Uses of Human Heredity. New York: Alfred A. Knopf.

Kimmelman, Jonathan. 2000. "Risking Ethical Insolvency: A Survey of Trends in Criminal DNA Databanking." Journal of Law, Medicine and Ethics. 28: 209–221.

Kuhl, S. 1994. The Nazi Connection: Eugenics, American Racism, and German National Socialism. New York and Oxford: Oxford University Press.

Laughlin, H. H. 1914. The Scope of the Committee's Work, Bulletin No. 10A. Cold Springs Harbor, NY: Eugenics Records Office.

Lowe, Alex L.; Urquhart, Andrew; Foreman, Lindsey A.; and Evett, Ian. 2001. "Inferring Ethnic Origin by Means of an STR Profile," Forensic Science International. 119: 17–22.

Ludmerer, Kenneth M. 1972. Genetics and American Society. Baltimore, MD and London: The John Hopkins University Press.

Maranto, Gina. 2000. Quest for Perfection: The Drive to Breed Better Human Beings. Lincoln, NE: iUniverse.

Mauer, Marc. 1999. Race to Incarcerate. New York: New Press.

Miller, Jerome G. 1992. Hobbling A Generation: Young African American Males in the Criminal Justice System of America's Cities. Baltimore, MD: National Center on Institutions and Alternatives, Alexandria, Virginia.

Nelkin, Dorothy M., and Lindee, Susan. 1995. The DNA Mystique: The Gene as a Cultural Icon. New York: Freeman.

New York Times. 1993. "China to Ban Sex-Screening of Fetuses." November 14.

New York Times 1994. "India Fights Abortion of Female Fetuses." August 27.

Paul, Diane. 1984. "Eugenics and the Left." Journal of the History of Ideas. 45(4): 567–590.

Proctor, Robert. 1988. Racial Hygiene: Medicine under the Nazis. Cambridge, MA: Harvard University Press.

Proctor, Robert. 1999. The Nazi War on Cancer. Princeton, NJ: Princeton University Press.

Reilly, Philip. 1991. The Surgical Solution: A History of Involuntary Sterilization in the United States. Baltimore: Johns Hopkins University Press.

Robertson, John A. 1994. Children of Choice: Freedom and the New Reproductive Technologies. Princeton, NJ: Princeton University Press.

Roll-Hansen, N. 1988. "The Progress of Eugenics: Growth of Knowledge and Change in Ideology." History of Science 26(Part 3, No. 73): 295–331.

Shriver, Mark D.; Smith, Michael W.; Jin, Li; et al. 1997. "Ethnic-Affiliation Estimation by Use of Population-Specific DNA Markers." American Journal of Human Genetics 60: 957–964.

Silver, Lee M. 1997. Remaking Eden. New York: Avon Books.

Tesh, Sylvia N. 1988. Hidden Arguments: Political Ideology and Disease Prevention Policy. New Brunswick, NJ: Rutgers University Press.

U.S. Department of Justice, Office of Justice Programs. 1992. Bureau of Justice Statistics, January, Vol. 1., No. 3, NCJ-133097. Washington, D.C.: Author.