Column from August 26, 1999
Will Genetic Research Lead to Eugenic Policies?
Copyright 1999 by Laura Hershey
[NOTE: The following article will appear in an upcoming issue of the Resist newsletter, published by Resist Inc., an activist organization that strives for social change and fights injustice. For more information, visit the Resist web page, or email Resist.]
Disability-rights activists, myself included, have become increasingly alarmed about the economic and political issues arising from the rapidly advancing field of genetic research. The Human Genome Project, a multi-year, multimillion-dollar government-funded endeavor, promises eventually to "map" all of the 60,000 to 90,000 human genes and chromosomes. Scientists now expect to be finished sequencing genetic information by the year 2003, or even sooner.
The application of genetic knowledge to the repair of damaged genes, for the purpose of treating certain illnesses, may offer welcome benefits to some people with disabilities. But genetic research is likely to be put to other, more insidious, uses -- such as denying health insurance, even jobs, to people whose genes predispose them to medical problems. Another threat is the implementation of eugenic policies to "weed out" certain types of people from the population. Thus, along with the much-heralded scientific advances offered by genetic research, disability activists nervously witness a resurgence of eugenic thinking.
Using ultrasound and abortion to select a child's sex is regarded as unacceptable to most people. Using genetic testing to eradicate characteristics such as homosexuality is still a new concept, but is likely to cause a great deal of controversy. Yet the media and the public seem to accept, almost without question, the idea of screening for genetic anomalies that cause disabilities and then using that information to eliminate certain conditions, by eliminating their carriers before birth.
Scientists and journalists may consider genetic screening against disability a wise public health strategy. But the progressive disability community sees the dangers inherent in targeting genetic research toward efforts to do away with disability. Ruth Ricker, who has congenital dwarfism, and who formerly served as president of Little People of America, wrote, "The basic presumption that disability is a condition to be cured or prevented devalues people living with disabilities."
Many people assume that people with disabilities would want to spare future generations from the difficulties we had to endure. But this assumption relies on another assumption, that our disabilities are inherently problematic. The disability-rights movement disputes that idea. Rather than blaming our physical or mental disabilities themselves, we see our problems as rooted in social, physical, economic and political barriers. Attempting systematically to wipe out disabilities is the wrong solution. Instead, society should commit itself to removal of these barriers, and to full equality for people with disabilities.
Still, why would disabled adults object to genetic practices which do not directly affect us? At first glance, genetic screening seems to target only potential people with disabilities -- either fetuses diagnosed with genetic anomalies, or those not yet conceived, but at risk of such anomalies. But in fact, the mindset that advocates the widespread, even routine use of screening also promotes efforts to "prevent disability" -- not by reducing occupational hazards and violence, nor by improving health care or environmental conditions; but by deterring the births of children who may have disabilities.
Genetic counseling, prenatal testing, and selective abortions arise from -- and reinforce -- the erroneous and dangerous belief that people with disabilities are a problem. As our society struggles with the allocation of health care resources, we overlook the vast amounts of money which are consumed by corporate bureaucracies and private profits. People with disabilities are scapegoated for needing and using expensive medical services and ongoing supports.
As a feminist, I have always been pro-choice on matters of reproductive freedom. That's another reason that the new eugenics movement disturbs me: It's not about granting women greater autonomy; it's about pressuring women to carry out public policies which are driven by scarcity economics, utilitarianism, and deep-seated social prejudice against people with disabilities. It's also about stigmatizing women who do bear children who have disabilities.
As an example, witness the recent remarks of Dr. Bob Edwards, world-renowned embryologist and creator of Britain's first test-tube baby. Speaking at an international fertility conference, Edwards said the increasing availability of prenatal screening for genetic disease gave parents a moral responsibility not to give birth to disabled children. Edwards celebrated a new age in which every child would be genetically acceptable. "Soon," he pronounced, "it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children." At the same conference, physicians were discussing the development of a new, comprehensive national screening program for Down syndrome. The program, expected to begin next year, will essentially mandate testing for all pregnant women.
Since virtually the beginning of the disability-rights movement, activists have critiqued "the medical model." This model viewed people with disabilities--our bodies, our social identity, our private histories--as pathology. The medical model viewed people with disabilities as afflicted, ill, aberrant, burdened patients to be cured, or at least rehabilitated.
We refuted the mastery of the physician, and challenged the built-world around us to change, to adapt to our nonstandard specifications. The disability-rights movement insists on accessibility and accommodations, not as benevolent gestures toward the "less fortuante" but as the civil rights of a large political minority.
Increasingly, another ideology is evolving from the medical model. The field of public health has gained prominence in recent years, spawning new, perhaps equally coercive beliefs about disability.
Under the public health model, one person's health or illness becomes a societal responsibility. Health equals good citizenship, whereas illness is expensive, disruptive, and (with genetic intervention) can be preventable.
For all its oppressiveness, the old medical model did claim as its primary concern the well-being of the patient herself. Its definitions and prescriptions could be profoundly misguided, but they were made in the name of serving the disabled person's needs. In contrast, the public health model aims to serve the dominant (nondisabled) majority, by cutting costs associated with disability. As disability-rights advocate, author, and psychologist Carol Gill points out, the idea of "promoting wellness" sounds benign -- but in practice, it can mean that "disenfranchised people suffer."
This isn't just a matter of good science being used for bad purposes. Disability activists question the research itself; we deserve and demand an opportunity to give input into the directions taken by the Human Genome Project and other research endeavors. This means questioning the presumption of total scientific objectivity.
Writes Ricker: "In the present context, each time a scientist decides to do research on a particular gene or trait in order to figure out how to alter that gene or trait to result in an 'improved' human being, that scientist is making a eugenic decision. Deciding which genes to investigate, alter, delete or insert is a process inherently imbued with value judgements about what is 'good' and 'bad' for humankind."