Eugenics

The history of the eugenics movement raises many issues relevant to the expanding work in genomics at the beginning of the twenty-first century, especially the Human Genome Project (HGP). Since the advent of new technologies associated with test-tube babies, sequencing the human genome, cloning new organisms from adult cells, stem cell research, genetic testing, and the prospects of gene therapy, the term eugenics has once again come into popular culture. Since it is possible, through in utero testing, to determine if a fetus is male or female or has Down syndrome or a mutation for Huntingon's disease, cystic fibrosis, thalassemia, or Tay-Sachs disease, should these tests be required for all pregnant women? And if so, who should have access to the results? Can medical insurance companies refuse to cover families or their children if the mother does not undergo genetic testing of the fetus? Some medical ethicists argue that the outcome—controlling births in order to reduce the number of "defective" people in society—is identical to that issuing from the old eugenics movement. According to this view, it makes little difference whether state legislation or social and economic pressures force people to make reproductive decisions they might not otherwise make. Other ethicists, however, argue that state coercion, as in the old eugenics movement, is qualitatively different from various forms of social pressure, since the latter still gives the individual some range of choice. In addition it can be argued that modern genetic decisions are made on a case-by-case basis and do not involve application of policies to whole groups defined racially, ethnically, or nationally.

Clearly it is in the interests of insurance companies to reduce as much as possible the medical costs incurred by their clients. And some would argue that it is also in the interest of individual families to avoid bringing a seriously disabled child into the world. But ethicists raise the question of what is "disabled" and who should be the judge. These issues have become more pressing the more costly medical care has become and the more ancillary social services are cut back. Ironically, as a result of sequencing the human genome, a project that carried with it funds for ethical considerations, geneticists now know that there is no one-to-one correspondence between genotype and phenotype and that the reading out of the genetic code is far more plastic than previously believed. Individuals with the same mutation in the cystic fibrosis gene, for example, can have quite different phenotypes (some are seriously affected and others are not or the effects manifest themselves in different organs and at different stages in development). Thus in utero genetic testing may reveal a mutant gene but will provide little information on how the child will turn out phenotypically.

While these various ethical issues are problematical, with well-defined clinical conditions, they are infinitely more so when mental, behavioral, and personality traits are the center of discussion. From the last quarter of the twentieth century many claims have been made for identifying genes that affect human behavior or personality (alcoholism, manic depression, criminality, homosexuality, shyness, aggression). No gene or group of genes has ever been isolated or shown clearly to affect any of these conditions, yet the belief that the conditions are to a significant degree genetically determined has become widespread throughout the media and in the public. Reproductive decisions based on circumstantial or nonexistent data add another level of ethical considerations in the growing debate about reproductive technologies. Recognizing the consequences of policies put forward under the guise of the old eugenics movement can help avoid some of the more obvious errors of the past.