For those who thought the practice of eugenics was ancient history, Ed Larson, J.D., Ph.D., is here to tell you that history may well be repeating itself. Larson, a Talmadge Professor of Law and Russell Professor of history at the University of Georgia, addressed a large group of scientists, students, community members, and disability rights activists at the University of Minnesota on September 17. Larson’s talk was part of the Lunch Series on the Societal Implications of the Life Sciences cosponsored by the University’s Consortium on Law and Values in Health, Environment, and the Life Sciences and The Joint Degree Program in Law, Health, and the Life Sciences. Larson’s presentation described the modern practice of genetic testing in the context of the eugenics movement of the early 20th century, and its implications for society.
Eugenics is the practice of eliminating heritable human disabilities through selective breeding. The movement began in England in the late 1800s under the direction of Francis Galton and was brought to the United States by scientist Charles Davenport and H.H. Goddard, a psychologist. Eugenics took on two forms: positive eugenics and negative eugenics. The former encouraged the procreation of individuals with desired heritable traits. The latter discouraged the procreation of disabled individuals, or those with undesirable heritable traits. Eugenicists targeted those people who had inheritable forms of retardation, mental illness, and physical deformity along with those who exhibited undesirable social behavior that was thought to be heritable, including crime, prostitution, and alcoholism.
The most notorious programs stemming from the eugenics movement were the segregation and compulsory sterilization of those that society deemed unfit to reproduce. During the 1920s, all 48 states had laws that built and maintained institutions to segregate people with disabilities, and 32 states enacted compulsory sterilization laws. Ultimately, over 60,000 people in the United States were forcibly sterilized beneath these laws.
Aside from the public policies that institutionalized eugenics, the movement also fostered a public education campaign aimed at coercing the public to voluntarily practice eugenics. These more subtle efforts to promote selective breeding are of greater importance to modern society.
Eugenics was taught in high school biology classes, written about in popular magazines, promoted through traveling exhibits, and discussed in the movies. The most notable example of eugenics propaganda was a full-length feature film from the early 1900s entitled “Are You Fit to Marry?”
The film encouraged couples to be tested for disabilities before they married and began having children. Inspired by a Chicago physician who euthanized “defective” newborns, the film used the authority of science and religion to encourage people to voluntarily practice eugenics through reproducing only if they were deemed fit by the scientific community. Larson noted, however, that “most of those pronounced unfit to marry are disabled more for how people treat them than for any actual physical or mental impairments.”
In the beginning of the 21st century, said Larson, “human genetic testing is transforming conventions for identifying and addressing human disabilities.”
Genetic testing is used in three basic situations, according to Larson. First, there is predictive gene testing, which involves testing people for disabilities that may become symptomatic later in life. Second, there is carrier testing, in which at-risk prospective parents are tested for recessive disabling genes that may be passed on to their children. Third, there is prenatal testing for genetic disabilities.
Proponents of genetic testing cite the differences between modern genetic testing and eugenics. First, they argue that there is now better science underlying the process of identifying heritable disabilities. Second, there are enhanced legal protections against discrimination of those with disabilities. Lastly, there are more sophisticated techniques for eliminating unwanted disability, such as gene therapy.
Larson points out that complications still exist in the process of identifying disabling genes. The main deterrent to genetic testing is resistance on the part of individuals to get tested because of their fear of discrimination on the basis of the test results.
Larson quoted Adrienne Ash, a bioethicist at Wellesley College in Massachusetts, saying that “as we learn more about the role of genes in health and disease, ever larger numbers of people who never before were perceived as disabled will discover that their genetic characteristics lead them to be viewed as disabled by others, most notably employers and insurers.”
Because people from all classes will have the potential to be labeled as disabled, there is hope that widespread discrimination as evidenced in the eugenics era will not repeat itself. As an added matter of protection against discrimination, 44 states have enacted laws against genetic discrimination to supplement the federal antidiscrimination in employment legislation, the Americans with Disabilities Act. Forty-three states have also passed measures designed to protect individuals from discrimination by health insurance companies. The problems of genetic testing, however, are much more extensive than just discrimination by employers or health insurers.
Disabilities are defined by both medical science and by social construction. The eugenics era put forth a medical model of disability that sought to identify heritable disabilities and eliminate them. In contrast, many disability rights activists today feel that a societal model of disability is more appropriate. According to Larson, this view holds that “people are disabled not by their bodies, but by society.”
Some fear that human gene testing will reinforce a medical model for the definition and remedy of human disabilities, which will lead to increased isolation of those with genetic disabilities. But, the social model also poses problems for genetically disabled people. There is the possibility of society judging people against a “socially constructed standard of genetic normality,” said Larson, which would discriminate against people who lead “lives worth living,” despite their disability.
It seems far-fetched that modern society would embrace the compulsory eugenics practices of the early 20th century. However, the principles of eugenics are still alive and well in the era of genetic testing. As Larson stated, “the meaning of human gene testing for disability will be a matter of individual choices made within social contexts.” How society views and treats those with disabilities will be increasingly influenced by the technology to identify and possibly eliminate these genetic problems.
The challenge for modern society is to balance the competing interests of eliminating to correcting genetic disability and respecting an individual’s right to live with or without a genetic disability.
If you would like to view Professor Larson’s talk, you may download it on the web at http://www.jointdegree.umn.edu/conferences/.
Rebekah Orr is a Joint Degree Student in Law and Health Services Research, Policy, and Administration at the University of Minnesota.