Genetics Society Offers Thoughts for Future

Eugenics comes in many guises, from the fetal hatcheries of Aldous Huxley's 1931 vision of a brave new world, to films such as Gattaca, where parents pick and choose their future offspring's inherited traits. In the real world, eugenics is associated with the horrors of Nazi Germany, and more subtly with certain medical tests widely used in many nations today. The blurring of the lines between eugenics and genetic research has prompted the American Society of Human Genetics (ASHG) to release a statement, "Eugenics and the Misuse of Genetic Information to Restrict Reproductive Freedom."1 The paper reviews the roots of eugenics, but it also offers a look ahead. "What we are really saying is that we are entering an era when an overwhelming amount of information is coming, and on occasion a third party could misuse genetic information," says Philip R. Reilly, executive director of the Shriver Center for Mental Retardation in Waltham, Mass. He is a clinical geneticist, an attorney, and chair of the committee that wrote the statement. In the statement, the organization "reaffirms its commitment to the fundamental principle of reproductive freedom and unequivocally declares its opposition to coercion based on genetic information." The catalyst was China's Maternal and Infant Health Care Law. "Three Octobers ago, at the annual business meeting of ASHG, several scientists raised concern over holding the International Congress of Genetics in Beijing in 1998 because of the law," relates Reilly. The 1994 law concerns "ensuring the quality of the newborn population" and forbids procreation if a physical exam shows "genetic disease of a serious nature ... that may totally or partially deprive the victim of the ability to live independently, that [is] highly possible to recur in generations to come, and that [is] medically considered inappropriate for reproduction."2 Such conditions include mental retardation, mental illness, and seizures. Despite reports from Chinese geneticists that the laws are not enforced, the committee felt the need for an official statement, but then broadened it "to reexamine the notion of using genetic information in the context of reproductive freedom in the modern world. We chose not to target China, make it more global in reach and scope," says Reilly. The Chinese law's assumption that certain broad categories of disease are inherited echoes eugenics laws of a century ago. An 1896 law in Connecticut forbade sex with anyone who had epilepsy or was an "imbecile" or "feebleminded." The first U.S. federal law tinged with eugenics, from 1907, required sterilizing institutionalized mentally retarded men and criminals, pending advice of a physician. In 1910 Charles Davenport established the Eugenics Record Office at Cold Spring Harbor, N.Y., to amass family and institutional data, including feeblemindedness, which he thought to be an autosomal recessive trait. Next, the Immigration Act of 1924 limited entry of "idiots, imbeciles, the feebleminded, epileptics, and insane persons," to avoid weakening the gene pool. "The language in the Chinese law is every bit as flawed in using global categories like mental retardation and epilepsy--which have certainly far more environmental causes than genetic causes," explains Reilly. And so the seeds of Nazi Germany may have been sown in U.S. laws and programs, some geneticists maintain. But looking back armed with today's genetic knowledge may not be fair. "In retrospect, no one claimed that eugenics programs were based on science; it was pseudoscience at best. In the United States at least we made an effort to develop eugenics programs around the best understanding of the heredity of mental retardation then," Reilly contends. Francis Galton, cousin of Charles Darwin, coined the term eugenics in 1883, from the Greek for "good born." He defined it as "the science of improvement of the human race germ plasm through better breeding."3 In its strictest sense, eugenics is associated with coercion, usually via governments, such as the 2,500-year-old caste system in India or antimiscegenation laws in the United States from 1630 to 1967. But coercion can arise from social pressure, which may fuel such practices as sex selection, done in China and India. Social pressure is also behind genetic testing. "Eugenic ideas are already in play in genetic testing, such as when couples request testing for the XYY chromosome anomaly or for spina bifida. These are choices based on views about quality of life, and are very much eugenic. That does not make them indefensible or wrong, but it does require calling them what they are." says Arthur Caplan, director of the University of Pennsylvania's center for bioethics in Philadelphia. And although genetic testing may not be eugenic in intent, it may ultimately be so in effect, by altering the gene pool. This is the case for prenatal screening and testing for neural tube defects (NTDs), which include anencephaly and spina bifida.4 Since 1974 the alpha-fetoprotein maternal serum test has been widely used to identify women at high risk of carrying a fetus with an NTD, which further testing must confirm. In 1991, a meta-analysis from the Medical Research Council in the United Kingdom concluded that folic acid supplementation during pregnancy can cut NTD recurrence risk by 70 percent.5 But when epidemiologists attempted to track whether folic acid supplementation was lowering NTD incidence, they hit a roadblock, because records of early pregnancy terminations had not been kept. That is, the incidence of NTDs, based only on newborns, stillborns, and late fetal diagnoses, was a gross underestimate. "For NTDs in the United Kingdom, the vast majority of fetuses don't come to term--85 to 90 percent are terminated," says Reilly. Down syndrome is another medical condition where prenatal detection and pregnancy termination is masking incidence, with most cases in fetuses of women under age 35 who would not usually be screened.6 Iceland's current effort to amass medical records, including genetic information, on its entire population has raised concerns of eugenic goals.7 Reykjavik-based deCODE Genetics is building the databases, which Parliament approved by a 37-20 vote on Dec. 16, 1998. The goal is not to improve the gene pool, but to promote health. "The issues there are different because there is no focus on reproduction. They are trying to identify genes and their proteins for use as drug targets. If a government, after full debate, finds it favorable, then that is democracy in action," says Reilly. Lee Silver, a professor of genetics at Princeton University and author of a popular book on the future of genetics,8 agrees. "Many people seem to think that the Iceland project is unethical because it will reveal genetic information about the Icelandic people. Statistical information on a population does not violate individual privacy, especially when all participants have given their consent, and when no individual will be revealed by name." Reilly, Caplan, and Silver view the coming avalanche of genetic information with optimism, considering the prospect of a brave new world or Gattaca as unlikely. "Nonscience scholars look at the Human Genome Project with a general hysteria. It reminds me of the way in which the public viewed vaccines when they were first developed 200 years ago, and the initial hysteria that has accompanied many other powerful, society-changing advances in science and technology," says Silver. All also agree that the scientific community supports respect for genetic privacy, and that invasion of it will happen by accident, not government edict. Fearing or blaming government may be misplaced, according to Caplan. "Social pressure will drive eugenics in this country. The government will never impose its will on reproductive choice. But we can create desires and expectations in the marketplace, and that is where the action will be."9 Ricki Lewis (rickilewis@nasw.org) is the author of Human Genetics: Concepts and Applications, McGraw-Hill College Publishing, 1999, and a contributing editor for The Scientist. Board of Directors of the American Society of Human Genetics, "Eugenics and the misuse of genetic information to restrict reproductive freedom," American Journal of Human Genetics, 64:335-8, February 1999. M.E. Pembrey, E.N. Anionwu, "Ethical aspects of genetic screening and diagnosis," in Principles and Practice of Medical Genetics, D.L. Rimoin et al., New York, Churchill Livingstone, 1996. F. Galton, "Inquiries into human faculty and its development," London, Macmillan, 1883. H.S. Cuckle, N.J. Wald, "Impact of screening for open neural tube defects in England and Wales," Prenatal Diagnosis, 7:91-9, 1987. MRC Vitamin Study Research Group, "Prevention of neural tube defects: results of the MRC vitamin study," The Lancet, 338:132-7, 1991. E. Alberman et al., "Down's syndrome births and pregnancy terminations in 1989 to 1993: preliminary findings," British Journal of Obstetrics and Gynaecology, 102:445-7, 1995. M. Enserink, "Iceland OKs private health databank," Science, 283:13, Jan. 1, 1999. L.M. Silver, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family, New York, Avon Books, 1998. A. Caplan, "What is morally wrong with eugenics?" in Controlling Our Destinies, P.R. Sloan, ed., In Press, Notre Dame, Ind., Notre Dame University Press, 2000.

Genetics Society Offers Thoughts for Future

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