Preimplantation genetic screening is the latest assault against a truly human future. According to a report in the 27 February Journal of the American Medical Association, a 30-year-old woman has chosen to use the technique because she carries the rare gene for early onset Alzheimer’s disease. This particular variety of Alzheimer’s reportedly affects adults by the time they are 40 years of age.
The unidentified woman had a baby girl who is allegedly free from the Alzheimer’s gene because she was selected from a number of embryos, some of whom presumably had the gene and were therefore destroyed.
Prenatal genetic screening may be performed either before implantation or in utero. In preimplantation screening, embryos are tested for certain genetic conditions and either implanted or destroyed depending on the wishes of the prospective parents. In post-implantation screening, unborn children are tested in the womb to see if they are carrying deleterious genes and either carried to term or aborted.
Previously, almost all prenatal genetic screening was used in connection with abortion decisions. Since there are so few genetic therapies, prospective parents are faced either with the knowledge that their child will carry a disease gene when he or she is born or may decide to terminate the pregnancy through abortion. Some parents who would not choose embryo selection or abortion may refuse prenatal genetic testing, since they intend to bring a child to term regardless of genetic condition. Others may find the information important as they prepare for a child who may have disabilities.
In this case, embryos were created using in vitro fertilization techniques and the embryos were genetically screened. “Acceptable” embryos were implanted and “undesirable” embryos were destroyed or may have been used in research. But who decides what is a disease gene and what is merely a different genetic condition? Who decides who is a “desirable” or “undesirable” embryo?
Rutgers University sociologist Marque-Louisa Miringoff has observed:
In the pursuit of good health, we have begun to tread a fine line in “human selection.” We often choose to rule out certain diseases or, more accurately, certain human beings with those diseases. In some cases, as with Tay-Sachs disease, an as of now invariably fatal illness in early childhood, such a decision may be motivated by compassion. From many viewpoints, there is little quality of life in any sense traditionally understood, and great anguish and tragedy.
Other diseases, however, challenge our logic more severely; our sense of balance between cost and benefit is not clear. Huntington’s chorea is a case in point. Would a Woodie Guthrie be born today? Would his parents, as carriers of the disease, bear a child with the known risk? Could we now or soon screen him out prenatally? If the pace of genetic intervention continues, such an individual would not be born. Yet, I for one, am glad that he lived, although I mourn the anguish of his later life. One wonders, too, whether some perception of his coming illness contributed to the extraordinary creativity of his life.
Clearly, it is a just and meaningful desire to prevent fatal and debilitating diseases. Yet in pursuing this goal, we pay unobserved costs. In eliminating individuals with unwanted diseases, we also create a mind-set that justifies the process of human selection. We thus move into the questionable arena of human worth, and to some degree eugenic thought. We forgo the idea of therapeutic change (i.e., dietary change or other forms of treatment) and opt instead for elimination. Individuals are seen as flawed. It is easier and more desirable to prevent their existence than to work for their survival. (The Social Costs of Genetic Welfare, Rutgers University Press, 1991: 159-160).
Who knows who the other “Alzheimer’s children” might have grown up to be? Might they have been the next Woody Guthrie, Bethoven, Mozart, or Bach? Might they have been the brilliant scientists who discovered the cure for their own disease? We’ll never know because they were selected out as an “undesirable.”
The new eugenics
“Eugenics” is a compound word from two Greek words meaning “good” and “genes.” The eugenics movement began at the turn of the last century in England and the United States. Under the leadership of social engineers such as Francis Galton and Charles Davenport, the eugenics movement became a powerful social force.
So-called “Fitter Families” contests were held across the United States in the 1920s and 1930s. Fitter families were families with fewer incidences of physical and mental disability. Their ethnic heritage also had to remain intact. Racial intermarriage disqualified families. Thus, the fitter families were exclusively Caucasian. Mary T. Watts, co-founder of the first contest at the 1920 Kansas Free Fair, said: “While the stock judges are testing the Holsteins, Jerseys, and whitefaces in the stock pavilion, we are judging the Joneses, Smiths, and Johns.” Winners were given a medal inscribed with the slogan, “Yea, I Have a Goodly Heritage.”
The eugenics movement tried to create “better humans through breeding.” Yet breeding was not the only way to achieve the desired goals. In order to prevent “undesirables” from reproducing, mandatory sterilization laws were enacted. The “feebleminded,” “indolent,” and “licentious” were sterilized either without their consent or against their wills. So-called “eugenical sterilizations” increased from around 3,000 in 1907 to over 22,000 in 1935. By the 1930s most states had mandatory sterilization laws. In one well-known case, a young mentally retarded girl named Carrie Buck was given the “choice” either to be sterilized or to be returned to her asylum. Because both her mother and grandmother had been mentally retarded, the famous jurist Oliver Wendall Holmes declared of Carrie Buck, “three generations of imbeciles is enough” and mandated that she be sterilized. For information and hundreds of pictures from the American eugenics movement see www.eugenicsarchive.org/eugenics
With the power of genetic technology, a new eugenics has emerged. A 1993 March of Dimes poll found that 11% of parents said they would abort a fetus whose genome was predisposed to obesity. Four out of five would abort a fetus if it would grow up with a disability. Forty-three percent said they would use genetic engineering if available simply to enhance their child’s appearance.
Increasingly, college age women are being solicited for their donor eggs on the basis of their desirable genetic traits. In the summer of 2000, the Minnesota Daily, the student newspaper of the University of Minnesota, ran an add for egg donors. Preferred donors were women 5 foot six inches or taller, Caucasian, with high ACT or SAT scores, with no genetic illnesses, and extra compensation was offered to those with mathematical, musical, or athletic abilities. The add stated that acceptable donors would be offered as much as $80,000 for their eggs.
Preimplantation genetic screening is another weapon in the eugenics arsenal. This case puts our feet more than half way down the slippery slope. Selection of our offspring has never been easier. Embryonic death has never been more acceptable in our culture. This is eugenics with a vengeance.
Our culture’s emphasis on the genetically “fit” and our difficulty in embracing those who are “less fit” fuels this new eugenics mindset. We must resist the new eugenicists if we are to preserve a truly human future.
C. Ben Mitchell, Ph.D., is a fellow of the Wilberforce Forum’s Council on Biotechnology Policy and editor of Ethics & Medicine: An International Journal of Bioethics.journal
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