The individuals we serve may be facing a time where disabilities are seen as a disease and people with potential for that disease should not be born. How does this outlook impact the way human service professionals must do their jobs? We encourage people to self-advocate, self-determine, and lead a “normal” life; however, we must also understand the difficulties our clients face initiating these actions when groups in our society view individuals with mental retardation as expendable. Recent advances by the Human Genome Project hold great potential for all of humankind. However, this project has also spawned some in society to revisit the familiar concept of: eugenics. These two views must not be examined separately. In addition, professionals in the human services field cannot ignore the potential impact of these issues.
Begun in 1990, the Human Genome Project was originally a 13-year effort coordinated by the United States Department of Energy and the National Institutes of Health. The project's stated goals include:
Identifying all of the genes in human DNA
Determining the sequence of the 3 billion chemical base pairs that make up DNA
Storing the information in databases
Developing tools for data analysis
Addressing the ethical, legal, and social issues that may arise from the project.
Since the project's inception to 1999, a total of $315.6 million dollars has been spent, with only 3% to 5% of that budget allocated to Ethical, Legal, and Social Issues. On June 27, 2000, researchers completed mapping the human genome. The completion of this project now forces us to consider significant issues in our personal and professional lives.
Genetic testing, one of many implications, is the process of direct examination of a DNA molecule itself for inherited and genetic diseases, predispositions for diseases, and mutated sequences. This test can be done with DNA obtained from any tissue sample. Currently, testing is available for Alzheimer's disease, cystic fibrosis, muscular dystrophy, fragile X syndrome, PKU-related syndromes, Prader-Willi syndrome, and Angelman syndrome, and many more.
There is now a new form of discrimination on the horizon: genetic discrimination, which occurs when people are treated differently because they have a diseased gene or genes, even when they show no symptoms of disease. In addition, men and women who are carriers for a genetic condition may also be discriminated against because of their potential to have a child with a genetic condition.
Newsweek (1996) reported a case of a physician who suspected that a 2-year-old boy had fragile X syndrome and ordered a test to confirm his diagnosis. Four years later, a neurologist scribbled the words fragile X on a health insurance claim form. The health insurance company subsequently cancelled coverage for the entire family of six. A recent article in the Washington Post cited an example of a pregnant woman whose fetus tested positive for cystic fibrosis. She was informed that her health maintenance organization would be willing to cover the cost of an abortion but would not cover the infant under the family's medical policy if she elected to carry the pregnancy to full term (Davis, 1997).
These are just some examples of the negative effects of genetic testing. It is important to remember that not every test is 100% accurate, and the results of any test may not be kept confidential. This could lead to loss of funding for individuals, SSI, and insurance benefits and employment for all people.
Why should we be interested in gene testing? What are the potential outcomes of our ability to identify these disorders and likelihood of future disorders? Scientists estimate that there is the potential to reduce the number of cancer deaths to zero during our lifetimes. Additional benefits include carrier screening for certain diseases and disabilities, prenatal diagnostic testing, newborn screening, presymptomatic testing for predicting adult onset disorders such as Huntington disease, and confirmational diagnosis of a symptomatic person. With the potential to be able to predict with scientific accuracy the chance of developing cancer or heart disease, life expectancies and the health of all people can be dramatically increased. People will be able to make more informed decisions regarding their future and will have the opportunity to seek genetic counseling to reduce the risk of passing on a disease to their children.
However, with great power comes great responsibility. Specifically, with respect to disability, we are all acutely aware that discrimination on the basis of the presence of a disability has always been an issue for the people we serve. Laws such as the Americans With Disabilities Act (ADA) have been passed to help protect people with disabilities, but it is not yet clear how this law will impact people who may have a disability at some point in time or people who one day may have a child with a disability.
Most practitioners in the field of developmental disabilities are at least vaguely aware of the concept of eugenics through cases such as “Carrie Buck” and “Baby Doe.” Traditionally, eugenics is the outgrowth of the study of human heredity aimed at improving the quality of human kind. Modern eugenics, however, is based on the notion that careful planning through proper breeding is the key to bettering society. Although the concept has roots in Plato's Republic, the modern concept became popular in the early 1900s in England, the United States, and Germany. Between 1907 and 1937, 32 states passed sterilization laws aimed at various social “misfits,” which included individuals with mental retardation (Larson, 1991). Psychologist Henry Goddard is clearly remembered for his Kallikak family study, a study in which he attempted to show that mental retardation was hereditary. It was this study that led to his endorsement of the eugenics movement. Due to the Nazi regime, this term still evokes horror in most people, since by 1945, 6 million Jews, 750,000 Gypsies, and 70,000 German psychiatric patients were killed in search of the perfection of the race (Müller-Hill, 1988).
Unfortunately, the story does not end in history; it continues to the present. In 1995, a law was passed in China titled “The Law on Maternal and Infant Health Care.” This law requires premarital checkups to determine whether either partner carries genetic diseases of a serious nature, infectiious disease, or a relevant mental disease. The law further states that marriages will be permitted only after the couple has been sterilized. Only 2 years prior to the passing of this law, a health minister in China was quoted, “China now has more than ten million disabled persons who could have been prevented through better controls” (Tyler, 1993).
In 1994, Peter Singer, a recently appointed bioethicist at Princeton University, proposed that parents be given the right to terminate the life of an infant born with significant disability within the first 28 days of life (Baroff, 2000). Although he was not explicit regarding what he viewed as a significant disability, he cited an example—individuals with Down syndrome. His position rests upon the standpoint that during that first 28 days of life, an infant is not a person. Taking the next logical step, should there even be a limit at all? After all, if an infant is not a person, could an individual who has disabilities be considered a person? In light of recent scientific endeavors, we cannot allow this type of thinking to pervade our society's views. Inroads such as this only allow further thinking regarding eugenics, regardless of age or level of disability of an individual. After all, what is the standard? If we consider people with an IQ of less than 70 as eligible for death, perhaps in the future, as genetic testing “weeds out” the undesirables and gene therapy increases peoples' intelligence, eligibility might be those whose IQ is less than 100.
How, then, do we help individuals compete with a world view such as the following:
Feeble mindedness is an absolute dead-weight on the race. It is an evil that is unmitigated. The heavy and complicated social burdens and injuries it inflicts on the present generation are without compensation, while the unquestionable fact that in any degree it is highly inheritable renders it a deteriorating poison to the race. it depreciates the quality of a people. (Future Generations, 2000)
Another perspective is that
the testing and selective termination of genetically defective embryos is the only medically and morally defensible way to prevent the existence of people with severe disability, pain and suffering that makes their lives not worth living for them on a whole. (Bioethics Magazine, 1998, p. 187)
Then, in a world where disability is not valued, people with disabilities are also not valued, rendering our efforts towards “normalization” impossible. How do we cope with a culture that teaches us, with an emphasis on “success,” to devalue individuals whose disabilities render their chances of achievement, in its usual meaning, as less than likely? What of the ethical issues surrounding potential genetic therapies that may eventually “cure” mental retardation? Do people with disabilities lead fulfilling lives with their disability or in spite of it? How do professionals in the field of developmental disabilities assist and support individuals when the shifting climate indicates more than ever their worth, or lack thereof, in society?
It is ironic that at this time, movements such as self-advocacy and self-determination have risen to a visible and powerful level. These efforts must continue to be developed and encouraged on every level. States and counties can promote them, administrators can proclaim them, agencies can advertise them, service providers can encourage the use of them, but all of these actions must be simultaneous and continuous to be effective. Let us not forget, as well, the individuals we support. If we fail to offer them the opportunity to engage and interact on these levels, the programs cease to become effective.
All people need to be concerned with the potential ramifications for these thoughts and be tireless in their efforts to raise the consciousness of the general public and legislators. What, then, can people with disabilities offer to individuals and to society? Compassion, caring, courage, and success are all potentials that every person with a disability can affect. The ability to influence personal growth that can create significant and lasting change in another's life is an experience that many people may not have the opportunity to have. In addition, we must ever encourage individuals with mental retardation and other developmental disabilities to advocate for themselves in order to preserve their way of life, and possibly their own existence, as well as their children's.
Author:Jason Kuna, BA, Staff Development Coordinator, Keystone Community Resources, 406 N. Washington Ave., Scranton, PA 18503. Jkuna@keycommres.com.