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...recent court decisions regarding the right-to-die have combined to foster the existing controversy. Rehabilitation professionals are noticeably absent from these discussions. Review of the literature reflects that the preponderance of scholarly or popular writing regarding these practices lies outside the field of rehabilitation. This paper is intended to provide the rehabilitation professional with a primer about eugenics, euthanasia, and physician-assisted suicide (PAS). To accomplish this task, the following topics are addressed: definitions and historical context, conceptual models, international experience, social and ethical considerations, economic aspects, implications for practice, and future research.
Definitions and Historical Context
Eugenics
The concept of improving the human race through selective reproduction is reflected in Plato's Republic (Barnett, 2004; Larson, 2002). The Greek word eugenes means "well born" (Mahowold, 2003). Eugenics is defined as the study of hereditary improvements of the human race by controlled selective breeding (Smart, 2001). The word was conceived in England by Sir Francis Galton, a naturalist, statistician, and Charles Darwin's cousin. Sir Galton first used the word he coined in one of his publications in 1883 (Barnett, 2004).
The eugenics movement peaked in the United States between 1900 and 1935 (Lombardo, 2003). Eugenicists adopted two approaches, referred to as positive and negative eugenics, to prevent individuals considered to have disabilities from reproducing. Public education and voluntary abstinence were considered positive eugenics. Compulsory sterilization was considered negative eugenics (Larson, 2002). Anyone the state considered socially undesirable appeared subject to involuntary sterilization, including: individuals with hereditary deafness or blindness, those considered to have mental illness or developmental disabilities, individuals with epilepsy, criminals, prostitutes, or the poor (Larson, 2002; Lombardo, 2003). Social Darwinism, an outgrowth of Darwinism, proposed that social characteristics were inherited along with biological characteristics. Social Darwinism was used as a justification to eliminate socially undesirable characteristics through eugenic practices (Mostert, 2002). In the early 1900's, almost every state had at least one institution to segregate individuals with disabilities and 32 enacted compulsory sterilization laws. Between 1907 and 1945, 40,000 eugenic sterilization procedures were performed in the United States; half were conducted in the State of California (Bachraeh, 2004). More than 60,000 people were sterilized under these laws in the United States (Larson, 2002).
The most famous case of involuntary sterilization was that of Carrie Bell, a woman from Virginia who was alleged to have had mental retardation. Ms. Bell was the first woman in Virginia to undergo compulsory sterilization in the State of Virginia after the Supreme Court affirmed the State's compulsory sterilization law (Mostert, 2002; Larson, 2002; Lombardo, 2003; Palmer, 2003). The United States Supreme Court upheld Virginia's 1924 Involuntary Sterilization Act with its 1927 decision in Buck v. Bell. This Supreme Court decision has been repudiated but it has never been overruled (Palmer, 2003). The State of Virginia repealed its sterilization law in 1974.
Eugenics became associated with the concept of racial hygiene in Europe. In 1926, Denmark, Finland, Norway, and Sweden began institutionalized sterilization programs (Barnett, 2004). Influential social and economic forces in Germany, particularly after World War I, foreshadowed the genocide of people with disabilities (Mostert, 2002; Bachrach, 2004). In 1933, Germany's compulsory sterilization law was drafted (Mostert, 2002; Bachrach, 2004). Through a propaganda effort, individuals with disabilities became characterized as a separate group, perceived as different-criminals and of little or no economic value. Approximately 400,000 persons considered to have a hereditary sickness were sterilized under the Law for the Prevention for Genetically Diseased Offspring. Officially, another 70,273 adults with disabilities were euthanized through centers created by a program created in 1939 called Aktion T-4 (Mostert, 2002). Following World War II, public awareness of the Nazi Holocaust discredited the word eugenics and it essentially disappeared from use.
The genomic era of medicine began on April 14, 2003, approximately 50 years following the first description of the structure of DNA, when the Human Genome Project completed the sequencing of the human genome (Guttmacher & Collins, 2003). Conservative estimates suggest at least 13 million people in the United States are affected by genetic conditions (Koch, 2001). Genetic researchers estimate that every individual carries 5 to 7 lethal recessive genes (Larson, 2002). Ethical debate about the Human Genome Project and genetic testing has fostered a resurgence of interest and debate regarding eugenics and genetic practices (Barnett, 2004).
Euthanasia
Euthanasia is derived from the Greek word eu, meaning "well," and thanatos meaning "death," and early on signified a "good" or "easy" death (Nadeau, 1995). Today euthanasia has come to mean "a deliberate intervention, by act or omission, in the life of a dying person with the intention of putting an end to that person's life and suffering" (Nadeau, 1995, p. 10). Euthanasia is performed by physicians and has been further defined as "active" or "passive." Active euthanasia refers to a physician deliberately acting in a way to end a patient's life. Passive euthanasia pertains to withholding or withdrawing treatment necessary to maintain life (Frileux,, Lelievre, Munoz Sastre, Mullet, & Sorum, 2003). Sir Francis Bacon, an English philosopher and statesman, termed the phrase euthanasia early in the 17th century. At that time euthanasia was used as a way to describe a pain-free, peaceful and natural death that individuals desired to have (Yount, 2000).
The historical societal perspectives of euthanasia often parallel those of...
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