Eugenics, euthanasia, and physician assisted suicide: an overview for rehabilitation professionals.
Definitions and Historical Context
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 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 suicide. During ancient times in Greece, individuals could request government assistance with suicide which was sometimes seen as a noble act (Yount, 2000). However, when Christianity became the dominant religion in the Western world, those beliefs changed. The condemnation of suicide became a part of Christian teachings, and there were even anti-suicide laws in place. It wasn't until the 20th century when these laws were reviewed. Society found that punishing the family of the person who committed suicide was not only unfair, but that those who did commit suicide usually were viewed as doing so because of a mental illness (Yount, 2000).
In the United States, the first bill to legalize voluntary euthanasia by a physician was introduced in the Ohio legislature in 1906, but failed (Yount, 2000). The idea of euthanasia was again brought to the social forefront during WWII and Nazi Germany, when adults and children considered mentally deficient involuntarily were put to death (McKhann, 1999). Currently in the United States the only state where physician-assisted dying, in the form of assisted-suicide, is legal is in Oregon (Quill, & Battin, 2004).
Physician-assisted suicide (PAS) differs from euthanasia as euthanasia embodies that the dying person may or may not be aware of what is happening to them, and may or may not have requested to die (Hawkins, 2002). With PAS, the terminal patient wants to die and seeks assistance from a doctor in doing so (Dworkin, Frey, & Bok, 1998). The U.S. Supreme Court ruled that individuals do not have a constitutional right to PAS on June 26, 1997 (Hawkins, 2002).
Euthanasia and PAS are often linked together and intertwined in discussions. Physician-assisted suicide is also associated with the right-to-die movement, which gained momentum in the 1970's as medical advances kept individuals living who previously would have died. Living wills were first developed during this time as individuals wanted the right to refuse life-prolonging medical treatment and have some type of ownership over the quality of their life especially during the very end-stages (Yount, 2000).
During the 1980's the right-to-die movement gained even more momentum with the advent of durable power of attorney, which directed surrogates in making health care decisions for individuals if they were, or became, incompetent to do so for themselves (Yount, 2000). Physician-assisted suicide moved to the forefront in the 1990's, largely in part to Dr. Jack Kevorkian, and his public crusade of practicing, and accepting, PAS (Yount, 2000). Dr. Kevorkian has been incarcerated for practicing PAS.
The polarization of opinion regarding eugenics, euthanasia, and physician-assisted suicide is represented by the differences between the medical and minority models of disability. One paradigm favors eugenics, euthanasia, and assisted suicide while the other opposes these practices and advocates social support for persons with disabilities (Koch, 2004). Historically, the field of genetic counseling has relied upon the medical model of health and disease (Patterson & Satz, 2002).
The medical model of disability conceptualizes disability as a negative variation of the physical or cognitive norm, disadvantaging a person's life and their quality of life (Koch, 2001). The traditional physical definition of disability used in the medical model portrays a person that cannot independently perform tasks or actions (Koch, 2001). Autonomy and self-sufficiency become the defining aspects of the normal human existence. The emphasis upon individual autonomy, self-determination, and independence is compatible with although not an endorsement, of the practices of eugenics, euthanasia or assisted suicide (Koch, 2001). Individual models of disability, particularly the medical model, have been criticized as inadequate for explaining the complex phenomena of disability (Reindal, 2000). Adhering to a causal understanding of the interaction between impairment and disability, the medical model of disability promotes value judgements by the professional community regarding the quality of life a person with a disability may lead (Reindal, 2000).
In contrast, the minority or social model of disability attributes the concept of disability to the lack of environmental accommodation and negative societal reaction to individuals with disabilities. The minority model suggests that rather than the limits a condition imposes, it is the lack of understanding about the effects of a disability, or a failure to accommodate a physical or cognitive difference, that is the source of disability (Olkin, 1999; Smart, 2001; Koch, 2004). Social difference theorists and disability rights advocates insist that a physically-dependent, or interdependent life is as full and viable as one that is autonomous and independent (Koch, 2004; Parens & Asch, 2003). Personhood is perceived as communal or relational rather than an individual experience. Individuals in this paradigm are defined not by their disease or limitations but their capacity for relationships with others. The value of a person is absolute, and cannot be decreased or withdrawn in this conceptualization. Many authors with disabilities argue the worst aspect of having a disability is not the disability itself, but the societal prejudice against any deviation from the norm (Chen & Schiffman, 2000). Eugenics, euthanasia, and assisted suicide are not supported by the minority or social perspective of disability (Koch, 2004).
Internationally, China and the Netherlands continue eugenic practices. China passed the Maternal & Infant Health Care Law in 1994. In that year, China's population reached 1.2 billion people. A policy of one child per couple was established in order to achieve a population goal of less than 1.4 billion people in 2010 (Mao, 1998). A national survey in China conducted in 1987 revealed there were 51.64 million people with disabilities. Birth defects and genetic diseases accounted for 35.09% of the population of persons with a disability (Ming & Jixiang, 1993). A survey of Chinese geneticists suggested most Chinese perceived individuals with disabilities as a severe burden to families and society (Mao, 1998). Public education was considered an effective approach to reduce the number of genetic diseases. Social, cultural, and economic differences between China and the west were believed to be likely causes for differences regarding eugenics (Mao, 1998).
Galjaard's study of gene testing and social acceptance (as cited in Mao, 1998), revealed that the Netherlands operates seven regional genetics centers providing pre-and postnatal chromosomal analysis, biochemical and DNA diagnosis and genetic counseling services. The genetics centers are funded by national health insurance. As a result of the combined testing and counseling activities, it is estimated that the birth of 800-1600 children with severe disabilities are prevented annually. The annual cost of operating the genetic counseling centers is estimated at $50 million. However, the averted cost of care for the medical and psychosocial needs required by the 800 -1600 children with disabilities prevented each year was calculated as ranging between $500 million and $1 billion during an average 10 year lifespan (Galjaard, 1997 as cited in Mao, 1998).
Euthanasia, both active and passive, has been practiced in the Netherlands since the 1970's, and holds the largest source of data for physicians aiding in end-of-life decisions (Kaplan, Harrow, & Schneiderhan, 2002). In 1990 the Dutch government initiated the Remmelink Commission to survey the practice of PAS and euthanasia in the Netherlands. They found that at least 25,000 cases annually consisted of the withdrawal of life support (passive euthanasia), and of those, 27% were administered morphine in order to shorten life. About 9% of the deaths in the Netherlands in 1990 were attributed to PAS or euthanasia (Gentles, 1995).
The Remmelink Report, as it has now become known, found that between 6,000-12,000 cases annually were reported by Dutch hospitals in which PAS or euthanasia was practiced. In 90% of those cases it was a question of involuntary euthanasia, even though active euthanasia remains illegal (Gentles, 1995). The Board of Royal Dutch Medicine Association endorses euthanasia for newborns and infants with extreme disabilities (Gentles, 1995).
In the Netherlands study, the reasons for choosing to die included a loss of dignity, intolerable pain, and not wanting to have an unworthy death. Wanting to avoid being, or becoming dependent on others, and feeling tired of life, were also cited as reasons in choosing to end one's life (Kaplan, et al., 2002). Cases in Australia have been studied as well, regarding the choices people make for seeking PAS. In 1995, the Northern Territory of Australia legalized the option of euthanasia for the terminally ill, defined as those individuals having less than six months to live. In the first year under this policy seven individuals, all with cancer, sought to use this law to end their lives. Of those seven, pain did not appear to be a reason for their choosing to end their lives. Among the psychosocial factors listed as reasons for wanting to end one's life were social isolation, depression, anticipatory fear, sense of futility and a loss of dignity (Kaplan, et al., 2002).
Social and Ethical Considerations
The history of the eugenics movement has impacted the current practice of genetic counseling. Genetic counselors are guided by a nondirective standard of practice (Larson, 2003: Parens & Asch, 2003; Patterson & Satz, 2002). The goal of the therapist is to provide clear information in an unbiased manner (Saranji, 2002).
Knowledge and attitude of health care professionals is known to influence patient communication and medical decision making. In one study, medical students, residents, and genetic counseling students characterized as having minimal experience with disability or genetics completed a survey regarding their attitudes about disability and genetic screening (Ormond et al., 2003). The results of this study indicated the majority of the participants felt that disability caused significant suffering for the person with the disability and 64% felt that having a disability also caused significant suffering for family members. Perceptions about the quality of life for a person with a disability or their family were based upon cognitive functioning, pain experienced, and level of available social support. Sixty-two percent of those surveyed felt that research should be directed toward preventing genetic disability (Ormond et al., 2003).
Genetic testing can assist individuals with understanding the risk of having a child when a family history of a genetic disorder exists and how to manage personal health decisions when planning for a pregnancy (Bodenhorn & Lawson, 2003). Tests exist for genetic factors associated with more than 400 human conditions (Larson, 2002). Genetic tests fall within three broad categories; predictive gene testing, carrier testing, and prenatal testing (Glannon, 1998; Larson, 2002). However, identifying a genetic basis for a disability does not guarantee that a disabling condition exists or will develop (Larson, 2002).
Despite widespread prenatal testing, limited research has been conducted that addresses the decision making process during prenatal testing. Available studies are primarily qualitative and suggest that the perceived benefits and emotional factors influence the decision to undergo prenatal testing. Patient knowledge and actual risk factors have not been shown to be strong predictors of test use among those eligible for testing. Review of the literature reflects that deciding to undergo genetic testing is primarily related to subjective risk factors and emotions (Lerman et al., 2002). How a genetic test is offered also appears to influence whether or not a person will elect to undergo genetic testing. Individuals are more likely to undergo testing if it is offered in person and carried out immediately (Marteau & Croyle, 1998).
Research regarding the psychological impact of genetic testing is similarly limited. It does suggest however, that adverse reactions to test results are uncommon when provided through a program that separates the offer of testing from the testing itself, and provides clear information and emotional support before and after testing (Lerman et al., 2002; Marteau & Croyle, 2001). The psychological impact of testing results appears to depend more on pretest expectations, mood, and social support than the test results themselves (Marteau & Croyle, 1998). As an example, pretest levels of depression and hopelessness were found to be the best predictors of levels of hopelessness following test result disclosure rather than the actual results (Meiser & Dunn, 2000).
The psychological impact of certain disease diagnoses does appear to be influenced by the nature of the diagnosis. Suicide occurs with an incidence 4 times greater than the general United States population following a diagnosis of Huntington's disease (Meiser & Dunn, 2000). Stress response syndrome has been predicted to develop in 20% of individuals receiving the results of a genetic risk for a "dire" illness (Horowitz et al., 2001). Knowledge about the phases of response, an individual's defensive style, and supportive counseling can assist recently-diagnosed individuals with understanding and integrating the implications of their diagnosis (Horowitz, et al., 2001).
Family relationships may become strained by the results of genetic testing. Partners of the person undergoing testing may be more affected by the results of genetic testing than the person undergoing testing themselves (Marteau & Croyle, 2001). Compared with non-carrier's partners, the partners of carriers of Huntington's disease had substantially higher levels of distress at 1 week, 6 months, and three years after the disclosure of positive test results (Meiser and Dunn, 2000). A case study about a male spouse's experience during the decision to terminate a pregnancy reflects that he did not feel his grieving needs were met or recognized during genetic counseling (Robson, 2002). The increased need for family support is related to the sense of loss of control, feelings of guilt, and personal concerns that may affect others in the family who are not directly involved with the testing (Bodenhorn & Lawson, 2002).
Adults interviewed regarding their perception of genetic counseling appreciated the opportunity to receive direct education from experts in the field. Participants in this study indicated that they gained a thorough understanding of the risks and conditions, and appreciated having control of the decision making process. Positive genetic counseling experiences were associated with longer appointments than the traditional physician appointment times, provision of reading material, and the involvement of family members in the process (MacLeod, et al., 2002).
Women at risk for carrying a fetus with Down's syndrome or spina bifida were surveyed regarding their experience with genetic counseling (Roberts et al., 2002). The survey reflected that 87% were referred for genetic counseling by their doctor with the primary concern being the woman's age. Sixty-five percent of those surveyed indicated they would terminate a pregnancy if a disorder was present in their fetus. Results indicated as knowledge of the resources available for individuals with disabilities increased, the choice to continue a pregnancy became more likely. However, the vast majority of the participants expressed they were not encouraged to meet with the parent of a disabled child by either their genetic counselor or other medical personnel, were not provided information regarding future quality of life issues for a child with a disability, and were not provided either the positive or negative aspects of giving birth to a child with a disability (Roberts et al., 2002).
Attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis have rarely been addressed in the literature. Anticipating that individuals with physical disabilities would parallel the literature and express skeptical or negative attitudes toward genetic counseling, 15 adults with physical disabilities were interviewed regarding their feelings about genetic counseling (Chen & Schiffman, 2000). Results in this study indicated that approximately 78 % of the participants did not feel genetic counseling was eugenic. The majority of the participants did not correlate genetics with eugenics and expressed that they felt genetic advancements could improve the health of individuals. None of those interviewed recognized anti-disability perspectives about prenatal diagnosis (Chen & Schiffman, 2000).
Quality of life for persons with disabilities is central to the debate about eugenics, euthanasia and assisted suicide. Semi-structured interviews conducted with 153 persons described as having moderate to severe disabilities indicated that 54% reported experiencing an excellent or good quality of life (Albrecht & Devlieger, 1999). Analysis of the content of the interviews revealed the definition of quality of life was dependent upon finding a balance between body, mind, spirit, and maintaining relationships within the person's social context and environment (Albrecht & Devlieger, 1999). Interviews with persons having Huntington's disease or cystic fibrosis indicated that the participants felt that others perceived them as unworthy of life, and as unnecessary burdens upon society (Chapman, 2002).
Numerous fundamental ethical and value questions are raised throughout the present literature review. Examples of major value questions cited by Bodenhorn and Lawson (2002) include: What constitutes a life worth living?; Who should make decisions?; and How should life be valued? Ensuring that the decision maker is provided with balanced and current information to arrive at an informed decision and that each individual has the right to make decisions without external pressure presents additional ethical concerns (Chapman, 2002).
Kaplan et al., (2002) studied 93 of Dr. Jack Kevorkian's cases to understand an individual's choice for PAS. Information was gathered through medical reports, death certificates and from medical examiners themselves. A psychological autopsy was also administered to friends and relatives of 47 of Kevorkian's patients. The psychological autopsy has been widely used to study individuals who have attempted suicide. It allows a reconstruction of the psychological profile of the decedent, garnered through those closest to the person, and is parallel to physical autopsies (Kaplan et al., 2002).
In the 97 cases studied, 87% of individuals chose PAS because of a disability and another 36% were described as depressed. Fear of dependency occurred in 90% of the cases while 31.1% were terminally ill, which was listed as having less than 6 months to live (Kaplan et al., 2002). The gender ratio of general completed suicides in the United States was 18.9% women in 1995, but in the Kevorkian study 68% were women and 32% were men (Kaplan et al., 2002). Although 73.6% of the individuals reported having pain, only 42.6% had an anatomical basis for that pain (Kaplan et al., 2002). The average age of the decedents was 58.3 years and the majority were white (Kaplan et al., 2002).
Additional studies have shown that "younger age, greater education, affluence, and white race are all predictors of patient preference for less aggressive treatment and in favor of physician aid in dying" (Steinberg, & Younger, 1998, p. 3). Treatment choices for patients, families and physicians, are influenced by age, religion, ethnicity, and socioeconomic status (Steinberg, & Younger, 1998).
What does the above information tell us about the social implications of PAS? Perhaps most telling are the reasons an individual chooses PAS. As the data from international studies show, the psychosocial aspects of PAS are less related to physical burdens, and more towards personal. Similar to the Kevorkian study, where Kaplan et al., (2002) correlated women choosing PAS due to worries about their marriage breaking up and a deterioration of their economic state, women in Oregon chose PAS due to concerns about being a burden to their spouse.
Ethical considerations for physicians weigh heavily in the literature regarding PAS and euthanasia. The ethical issues focus on patient choice versus medical responsibility. Recently this debate was carried out in the judicial arena, specifically with the Terri Schiavo case in Florida, which may ultimately change the face of the current movement (Campo-Flores, 2005).
The argument regarding euthanasia and PAS becomes even more intense when economics are considered. Steinberg and Younger (1998) reported that the increased emphasis on cost savings and managed care will become the basis for decision making for the terminally ill, where as prior decisions were primarily clinically-based. The business of healthcare generates the dilemma with which Americans are faced.
Estimates show that about 1/3 of all families with a terminally ill family member will end up in poverty (Bilchik, 1996). Bilchik (1996) also reported that care for the terminally ill accounts for 10% of the national healthcare costs and that 27% of all Medicare spending occurs during the last year of a person's life (40% of the total is for the last month alone). Drugs for assisted suicide cost between $35-$45 and could ultimately become considered the less expensive treatment for death (Marker, & Hamlon, 2005).
In Oregon, 83% of doctors stated that financial pressures were a factor in a patient's request to die (Bilchik, 1996). Some fear that a right to die may soon become a duty to die, in order to eliminate families from financial ruin. A report from Harvard University stated that one-half of all bankruptcies in the U.S. are caused by medical bills. At the time of illness onset, more than three-quarters of those people had health insurance and most were middle class and educated (U.S. Newswire, 2005). Considering that 16.4% (46.2 million) of the individuals in the United States are uninsured, the idea of choosing death over bankruptcy of your family may become more appealing (Uninsured in America, 2000).
Implications for Practice
Rehabilitation professionals have been absent from the discussion about eugenics, euthanasia and assisted suicide. This absence reflects a large disservice to persons with disabilities. Many of the cases discussed in the available research involved individuals who would or could have participated in services provided by a rehabilitation professional. Counselors need to be aware of the social and economic implications for clients who feel like a burden to their family or lack the medical or economic resources to ensure a reasonable quality of life.
Educating individuals with disabilities about alternatives, options and available resources may make the decision to live with a disability more manageable. Educating the general public about the resources available to enhance one's quality of life appears equally as important, as socially and environmentally-imposed handicaps appear to have a greater impact on the decision to undergo PAS or to terminate a pregnancy than the illness or disability itself.
Becoming aware of the psychosocial aspects of euthanasia and PAS also affect the field of rehabilitation. Factors leading to the decision to live, die, or terminate a pregnancy are entangled with race/ethnicity, age, spirituality, gender and the legal system. Knowing how all of these factors affect individuals with disabilities, and their decisions to live or die, should be a primary concern of the rehabilitation field.
Areas for future research related to the field of rehabilitation are numerous. Further the majority of the research regarding genetic counseling with persons who have a genetic condition or disability is qualitative, exploratory, or limited to opinion pieces. One of the most critical areas is the psychosocial aspects of patients choosing PAS, and the involvement of rehabilitation counselors. Additional studies regarding the attitudes of person's with disabilities toward genetic counseling and testing are needed. The role of rehabilitation professionals regarding how and when they could become involved in the decision making process requires exploration. Issues regarding the economics of healthcare are another area ripe for research. Studying the relationship between healthcare costs, and decisions related to PAS and/or termination of pregnancy, could yield significant information for rehabilitation professionals.
Perhaps the starting point for research in the rehabilitation field should begin with the general knowledge, attitudes and beliefs, rehabilitation professionals possess about the practices discussed in this paper. Developing a strong understanding of the attitudes and values rehabilitation professionals possess about quality of life decisions and the implications of eugenics, euthanasia and PAS could lead to better training of rehabilitation counseling students. Expanded discussion of these topics appears appropriate for inclusion in courses about multicultural or psychosocial adjustment to disability issues. The research ideas mentioned above are starting points for developing a knowledge base specific to rehabilitation. The time has come to align our knowledge and actions as rehabilitation professionals with the needs of persons with disabilities relative to eugenics, euthanasia and physician-assisted suicide.
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Michigan State University
Michigan State University
Steve Zanskas, MS, CRC, LPC, Michigan State University, Office of Rehabilitation & Disability Studies, 455 Erickson Hall East Lansing, Michigan 48824. Email: email@example.com
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|Publication:||The Journal of Rehabilitation|
|Date:||Jan 1, 2006|
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