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Vernellia Randall, Slavery Segregation and Racism: Trusting the Health Care System Ain't Always Easy! An African American Perspective on Bioethics, 15 Saint Louis University Public Law Review 191 (1996) (264 footnotes).
I am a registered nurse and a family nurse practitioner. I have a master's degree in nursing. I practiced nursing for 15 years in Alaska and Washington. I write and work in the area of health care law. I understand the health care system and the legal system . . . I am African American and trust the health care system to work in ways that ultimately will harm my people.
Many people are surprised at the level of distrust of the health care system held by African Americans. However, fear and distrust of the health care system is a natural and logical response to the history of experimentation and abuse. The fear and distrust shape our lives and, consequently, our perspectives. That perspective keeps African Americans from getting health care treatment, from participating in medical research, from signing living wills, and from donating organs. That perspective affects the health care that African Americans receive. This fear and distrust is rarely acknowledged in traditional bioethical discourse.
Some bioethicists question the existence of a uniquely African American bioethical perspective. They maintain that since the values and beliefs held by African Americans are also held by other oppressed groups, such as Native Americans, there is no African American perspective. However, these traditional bioethicists miss (or ignore) an important point: perspective is merely a subjective evaluation of the relative significance of something--a point-of-view. Thus, to acknowledge an African American perspective, it is not necessary that African American values and belief systems be entirely different from others.
It is faulty to assume that any group shares exactly the same value system with other groups. For example, Americans do not have one ethical perspective. Rather, race, class, and gender modify the commonality of the American experience. Different groups have had different experiences that, at a minimum, modify the dominant American perspective, if not replace it with an entirely different value structure. For African Americans, the combination of slavery, segregation, and racism have given us a different set of intervening background assumptions about such essential bioethical concepts as personhood, bodily integrity, the moral community, fulfilling lives and utility.
As a subculture of the American society, we have experienced something that others have not. The unique combination of slavery, segregation, and racism have caused us to develop not only different behavioral patterns, values, and beliefs but also different definitions, standards, or ordering of values. Furthermore, even where there is little difference in value systems and perspectives, there is a difference in the normative application of bioethical principles. For instance, there is no question that the principles of autonomy, beneficence, nonmaleficence, and justice have not been applied to African Americans in the same manner as European Americans.
In the Poplar Tree Narrative Dr. Dick, a conscientious physician, applies the prima facie principles of beneficence, autonomy, and justice in such a way that castration of his black male patient is construed as a morally justifiable act, in substance and as a procedure . . . . [It kept the male] from getting into trouble . . . . [It made the male] . . . a better slave. . . . [He protected the male patient's autonomy] by getting what he construes to be [the patient's] informed consent.
The apparent principles of Eurocentric bioethics are embedded in a cultural matrix that encodes them with meaning. The reality of bioethics is that ideas, such as autonomy, choice, beneficence, justice, and informed *194 consent, are grounded in perspective and cultural context. Perspectives are based, in part, on class, race, and gender experiences. The experiences of poor people are different from those of rich people; those of African Americans are different from European Americans, Native Americans, Hispanic Americans or Asian Americans. Experiences differ for women and men. Furthermore, rich people, White people, and men have more power than poor people, African Americans, or women. Power also affects experiences. A group's perspective reflects both cultural context and power or status differentials.
But what then forms the basis of the African American perspective? Certainly, African American culture has acquired a significant part of its roots from the continent of Africa. For us, that means a belief system that includes a humanistic orientation, a focus on both personal and social responsibilities, and a high value placed on community belonging. To the extent that bioethical discourse and practice do not incorporate these values, they do not reflect the values of the African American community.
However, African Americans' distrust of the health care system is based on more than a lack of certain African-based values. Our distrust is the direct result of our unique cultural birth in America. The African American culture is uniquely American. In some ways, African Americans, like Indians and *195 Eskimos, are native Americans; that is, as a culture, African Americans exist only in America. African Americans are a blend of all the races of the world. The dominant racial basis for our group is a blend of features from many African tribes. The most prominent influence on African American culture has been its past (and present) experiences of slavery, segregation, and racism. These African American experiences are clear evidence of cultural context, power, and status differentials which have resulted in a distrust of the health care system. This historical distrust is reinforced through current, continued, and ever-present institutional racism. These experiences fuel the basis for African American distrust.
II. The Basis for African American Distrust
African Americans' distrust of the health care system is built out of a history that includes experimentation, the Sickle Cell Screening Initiative, Family Planning/Involuntary Sterilization, and the participation of the medical system in the justification of racism and discrimination in society.
A. Experimentation and Teaching Materials
The distrust of the American health care system is grounded in the knowledge that the health care system has been built on bodies of African Americans. For instance, the nineteenth century marked the rise of modern U.S. medicine. The advances in medicine were legion:
Advances in basic sciences such as pathology, histology, physiology and pharmacology; the introduction of the statistics and the numerical methods which forever changed the nature and scope of clinical medicine and public health; the clinical acceptance of vaccination for smallpox; introduction of the stethoscope; . . . controlling puerperal fever; rapid advances in clinical schools . . . laboratory medicine . . . and publication of Percival's CODE OF MEDICAL ETHICS.
However, during the same period the American health care system *196 evidenced a lack of attachment to esoteric research and pure science that resulted in American physicians performing bold, occasionally brilliant, clinical medical feats which were not being performed anywhere else on earth. Then and today it seems to be of little importance that those bold, occasionally brilliant . . . medical feats occurred on Blacks and the poor. Understanding the extent of the experimentation is important for understanding the basis of the distrust of African Americans. Slaves served both as instructional material for teaching medical students and as a source of entertainment at medical conventions. For instance, enslaved albinos and Siamese twins were often displayed at medical society meetings as freaks and sports. 1. Experimentation During Slavery
In the 1800s, Dr. McDowell successfully performed the removal of an ovarian tumor, a dangerous and radical surgery which he perfected on slaves. In 1800, hundreds of slaves, including two hundred slaves of Thomas Jefferson, were inoculated with smallpox to test the safety of a new vaccine. Dr. Crawford Long, probably the first physician to use ether agent as a general anesthetic, conducted a large percentage of his early experiments on slaves. To determine which medication would allow a person to withstand high temperatures, Dr. Thomas Hamilton placed slaves in an open-pit oven which was constructed to contain heat with only the slaves' heads above *197 ground. Dr. Walter F. Jones used a group of slaves to test a remedy for typhoid pneumonia which involved pouring five gallons of boiling water on the spinal column. Slaves actually suspected physicians of killing slaves or letting them die for purposes of dissection. While these rumors were never documented, slaves' bodies were dug up and sold to medical schools. Dr. Alexander Somervail, after accidentally discovering how to relieve the suppression of urine, tested his theory on other Black patients. Robert Jennings is credited with the development of a successful vaccination against typhoid infection that resulted from his successful experimentation on thirty slaves and free Blacks. Dr. P.C. Spencer, who gained notoriety with his discovery of an efficient and relatively safe technique for treating painful bladder stones, perfected his technique by performing the painful experimental surgery on slaves. Dr. Marion Sims--considered the father of gynecological surgery--perfected the techniques for gynecological surgery on slaves. He addicted the women to narcotics in order to sedate and immobilize them post-operatively. Furthermore, he performed the surgery repeatedly on the same women. Though the social norms have changed dramatically, Sims is still revered as a hero and an icon; the complete picture of him as a person who abused and exploited slaves is usually never portrayed.
2. Post-slavery Experimentation
The most well known post-slavery experiment is the Tuskegee Syphilis *198 Experiment which the United States engineered from 1932 through 1972. The Tuskegee Experiment involved four hundred African American men in a government-sponsored study to research the effects of untreated syphilis. While the men were not deliberately exposed to syphilis, as some rumors maintained, they were never told that they were not being treated or that effective treatment was available. Furthermore, even though the experiment was regularly reported over the course of the forty years, there was no outcry from the medical establishment. The effects of the Tuskegee Syphilis Experiment of maintaining and strengthening the distrust in the health care system can not be underestimated. The Tuskegee study served to reinforce the belief in the African American community that the distrust of the medical system was not merely an historical issue.
The Tuskegee Syphilis Experiment is not the only evidence of post-slavery abuse. In 1963, the United States Public Health Service, the American Cancer Society, and the Jewish Chronic Disease Hospital of Brooklyn, New York, participated in an experiment in which three physicians injected live cancer cells into twenty-two chronically ill and debilitated African American patients. The patients did not consent, nor were they aware that they were being injected with these cells. In 1972, twenty women, primarily poor, young, and Black, were bused from Chicago to Philadelphia to receive *199 abortions in an outpatient clinic where a new experimental medical device, called the Super Coil, was being used to induce the abortion. A complication of using Super Coil was uncontrollable bleeding that would eventually lead to shock and would require a total abdominal hysterectomy. During the 1970s, the government collected blood samples from seven thousand Black youths. Parents were told that their children were being tested for anemia, but instead, the government was looking for signs that the children were genetically predisposed to criminal activity. A similar experiment was performed on six thousand young men--approximately 85 percent of whom were Black--housed in Maryland state institutions for abandoned or delinquent children. The children's confidentiality was not protected and the blood-test results were passed to the courts to use as they saw fit. At least eighty-two charity patients were exposed to full-body radiation at the University of Cincinnati Medical Center. The patients were exposed to radiation ten times the level believed to be safe at the time; twenty-five patients died. Three-quarters of the patients in the study were Black men and women. The consent signatures were forged. Many women of color have been sterilized without their informed consent so that medical residents could gain additional experience in performing tubal ligations and hysterectomies.
3. Prison and Military Abuse
One area of significant post-slavery abuse has been the experimentation that has occurred in prisons. Because African Americans make up forty-four percent of all prisoners--almost four times our proportion in the general population-- we are overrepresented in any prison abuse. In 1962, at least 396 inmates at the Ohio State Prison were injected with live cancer cells so *200 researchers could study the progression of the disease. Between 1963 and 1971, radioactive thymidine, a genetic compound, was injected into the testicles of more than one hundred prisoners at the Oregon State Penitentiary to see whether the rate of sperm production was affected by exposure to steroidal hormones. Throughout Alabama between 1967 and 1969, inmates were used in flawed blood plasma trials. The study was managed by Dr. Austin R. Stough at Kilby, Draper, and McAlester prisons. There was no informed consent, and no accurate records were kept. At a California medical facility between 1967 and 1968, prisoners were paralyzed with succinylcholine, a neuromuscular compound. Because their breathing capacity was shut down, many likened the experience to drowning. When five of the sixty-four prisoners refused to participate in the experiment, the institution's special treatment board gave permission for prisoners to be injected against their will. In 1990, 1.7 million soldiers--twenty-two percent of whom were Black--were forced to take experimental vaccines under federal law. The law stipulates that soldiers cannot refuse to participate in the government's medical experiments.
The above instances of slavery and post-slavery abuses are cited not because they are the only instances of experimentation and abuse of African Americans, but because they are some of the most famous. While many Blacks may not be able to give you the details of the experimentation and abuse, the instances are a part of the collective Black consciousness which still influence African Americans' reaction to the health care system.
B. Sickle-Cell Screening
The debacle of sickle-cell screening in the 1970s also increased the distrust of the medical system, as did medical experimentation. Although sickle-cell disease has been described since 1910, it did not become a priority for federal *201 or private funding until the 1970s. In the 1970s, large scale screening was undertaken with the goal of changing African American mating behavior. Unfortunately, the initiative promoted confusion regarding the difference between carriers and those with the disease. This confusion resulted in widespread discrimination against African Americans. Some states passed legislation requiring all African American children entering school to be screened for the sickle-cell trait, even though there was no treatment or cure for the sickle-cell disease. Some states required prisoners to be tested, even though there would be no opportunity for them to pass on the trait. Job and insurance discrimination were both real and attempted. The military considered banning all African Americans from the armed services. African American airline stewardesses were fired. Insurance rates went up for carriers. Some companies refused to insure carriers. During that period, many African Americans came to believe that the sickle-cell screening initiative was merely a disguised genocide attempt, since often the only advice given to African Americans with the trait was, Don't have kids.
*202 C. Family Planning and Involuntary Sterilization
Family planning initiatives have been described as another attempt to reduce the Black population. This view is not without credibility. The fact is that the historical roots of family planning and birth control have been centered in controlling the population growth of African Americans. Margaret Sanger, considered the mother of family planning and reproductive freedom, supported and promoted the use of reproductive technology to diminish the reproductive liberty of African Americans.
We do not want word to go out that we want to exterminate the Negro population and the [Negro] minister is the man who can straighten out that idea if it ever occurs to any of their more rebellious members.
Throughout United States history, family planning and birth control have been used to limit the population size of African Americans. In the 1930s, the government funded the first birth control clinics as a way of lowering the Black birthrate: In 1939, the Birth Control Federation of America planned a Negro Project designed to limit reproduction by blacks who still breed carelessly and disastrously, with the result that the increase among Negroes, even more than among whites, is from that portion of the population least intelligent and fit, and least able to rear children properly.
In fact, the early birth control movement included strong factions advocating *203 eugenics or compulsory sterilization. In the 1960s, the government expanded the subsidization of family planning clinics as a way to reduce the number of persons on welfare. In so doing, the number of clinics were proportional to the number of Blacks and Hispanics in a community.
In the 1970s, some doctors would only deliver babies or perform abortions on pregnant African American women if the women consented to sterilization. Other women were threatened with the withdrawal of their welfare benefits if they did not agree to sterilization. In a case brought by poor teenage African American women in Alabama, a federal district court found that an estimated 100,000 to 150,000 poor women were sterilized annually under federally funded programs. In the 1970s and 1980s, Public Assistance officials tricked African American welfare recipients into having their teenage daughters sterilized.
A 1982 study determined that only twenty-five percent of White women were sterilized, compared to thirty-four percent of African American women. African American women of all marital statuses were more likely than White women to use sterilization as a contraceptive method. Further, African Americans in the South have the highest rates of hysterectomy and tubal ligation in the United States.
Today, some individual doctors encourage African American women to be *204 sterilized because they view the women's family sizes as excessive and believe that they are incapable of using contraceptives. Furthermore, the federal government still subsidizes sterilizations for women eligible for Medicaid coverage, though it will not pay for abortions. Thus, African Americans' distrust of family planning is justified.
D. Participation in Justifying Racism
Louis Agassiz, Samuel George Mortion, Samuel Cartwright, and Josiah Clark were the leading U.S. academic physicians to advocate the theory that Blacks were biologically inferior to Whites. In fact, many physicians used their science to create elaborate theoretical systems to justify the difference in the medical treatment of Blacks and Whites. They advocated for the establishment of uniquely Southern-oriented medical education to address the unique diseases of Black slaves, such as drapetomania--the disease causing negroes to run away. Furthermore, it is important to illustrate that these men did not represent the lunatic fringe. Their ideas were widely held and accepted. For instance, Oliver Wendell Holmes, Dean of Harvard's Medical School from 1847 to 1853, believed in and promoted the scientific value of the work of these scientists. In fact, Holmes held such regard for Samuel Morton's work that he considered Morton's research permanent data for all future students of Ethnology . . . .
III. African American Distrust and Current Bioethical Issues
Just like the rest of America, the African American community is facing a number of bioethical issues including: abortion, disparate health status, racial barriers to access to health care, racial disparities in medical treatment, the Human Genome Project and genetic testing, organ transplantation, AIDS, physician assisted suicide and right to die, reproductive technology, and violence. Unlike the dominant American group, African Americans view these issues through an additional screen of fear and distrust. It is this fear and distrust that causes us to believe that the principles of bioethics: autonomy, beneficence, nonmaleficence, and justice, won't protect our community from mistreatment and abuse.
*205 A. Abortion
Abortion is an issue that deeply divides American society. Generally, the arguments center on right-to-life and pro-choice ideologies. The situation for African Americans is not that simple. On the one hand, abortion-rights activity has increased among African Americans. In fact, Black women choose abortion at twice the rate of their White peers (21 per 1,000 for Whites, 57 per 1,000 for Blacks). On the other hand, the debate over abortion is too narrow, failing to address issues of prenatal care, infant-mortality rates, or teen-pregnancy rates. Furthermore, while many African Americans believe that every woman has the right to decide about abortion, those same African Americans believe that abortion is genocide. Some African Americans believe that this increase represents a form of eugenics: Black women do not realize that the people forcing abortion on our people as a panacea to our social problems have a long history of beliefs in eugenics. They have a long history of racism. In short, many African Americans view abortion as elitist, *206 racist and genocidal. Thus, a bioethical discussion centered on either right-to-life or pro-choice principles fails to take into consideration the social problems driving African Americans to abortions or the fear that abortion is merely another form of genocide.
B. Disparate Health Status
To African Americans, the continued disparity between the health status of African Americans and European Americans is significant evidence that the health care system is not to be trusted.
Wounded, [racism] retreated to more subtle expressions from its most deeply entrenched bunker . . . [F]orms of sophisticated racism attached to economic opportunities unfortunately can still be found today. . . . [N]owhere is that better exemplified than in the rate of excess death among black Americans.
Excess death represents the number of deaths actually observed prior to the age of seventy years, minus the number of deaths that would be predicted when age- and sex- specific death rates of the U.S. European American population are applied to the African American population. Compared to European Americans' mortality rate, African Americans experience 60,000 excess deaths a year. In particular, African American women have 53.12% excess deaths, as compared to European American women. African American women have excess deaths in every category but suicide. African-American women had 324.1% more deaths due to homicides,*126 163% more deaths due to diabetes, 77.6% more deaths due to cerebrovascular disorders, 78.4% more deaths due to cirrhosis of the liver, and 78.4% more deaths due to heart disease than European-American women. African American women have a 178.43% excess maternal rate.
African American men have 52.67% excess death rate over European American men. African American men had 598.7% more deaths due to homicides; 100% more deaths due to diabetes; 92.6% more deaths due to cerebral vascular disorders; 88.4% more deaths from cirrhosis of the liver; and 81.8% more deaths due to pulmonary infectious disease than European American men.
Children are not immune. For instance, African American infants are *208 222.81% more likely to suffer from low birth weight and its accompanying handicaps. 108.14% more African American infants die than do European American infants. When compared to the infant mortality of other nations, African-Americans rank thirty-second among countries compared to European-Americans' twelfth-place ranking.
The picture that is clearly painted by these health measurements is one of significant disparity between two races. Few health problems are more pressing than the persistent excess of morbidity and early mortality among African Americans. In fact, if we were to consider Blacks and Whites in the United States to be different nations, White America ranked twelfth in age-adjusted mortality rates (near Italy and Australia), whereas Black America ranked thirty-third (near Romania and Czechoslovakia) in 1991.
Without decent health, it becomes nearly impossible for African Americans to gain the other attributes--money, education, contacts, industry knowledge-- necessary to gain access to the American economic system. Despite technological advances, African Americans continue to be sicker than European Americans. Given this level of disparity, trusting the health care system ain't always easy.
C. Racial Barriers to Access
Racial barriers to access are a significant problem for African Americans. These barriers to access have their foundation in the historical *209 relationship between African Americans and Southern medical institutions. As slaves, African Americans were perceived as property. While some slave owners attempted to protect their own economic interests by providing minimal health care, most left the slaves to live or die as fate might befall them. After the Civil War, the Bureau of Refugees, Freedmen and Abandoned Lands (Freedmen's Bureau) was instituted to furnish supplies and medical services to the former slaves. However, the Freedman Bureau had very limited effect in providing services to former slaves. In fact, the Compromise of 1877 effectively ended the period of radical reconstruction which had been an attempt by the nation to make affirmative efforts in helping African Americans. During the Post-Reconstruction era, African Americans were excluded from health care by either prohibition or discrimination: Even where segregation and discrimination were not required by law they became *210 deeply ingrained in the mores. Such behavior became part of the American Way of Life. . . . This way of life remained visible until the Civil Rights Movement of the 1960s. After the 1960s, health care institutions either fled predominantly African American communities or instituted policies which resulted in limited access to health care for African Americans.
The continuing racial barriers to access are evidenced in discrimination that occurs in hospitals, the availability of facilities in the community, the segregation of facilities, and the limited availability of medical providers. For instance, many hospitals discriminate by using patient referral and acceptance practice standards that limit access. Moreover, increasingly, hospitals that *211 serve the African American community are either closing, relocating, or becoming private. This is a particular problem since many of the traditional sources of health care in the African American community also are vanishing. At one point there were more than two hundred African American hospitals in the United States. African Americans relied on these institutions to heal--and save--their lives. By 1991, only twelve hospitals continued struggling daily just to keep their doors open.
Other evidence of racial barriers limiting access to health care is manifested in the problem of patient dumping. An Arican American seeking care at a private hospital faces the possibility of being dumped; that is, the hospital may transfer an undesirable patient to a different facility. Congress passed the Emergency Medical Treatment and Active Labor Act (EMTALA) to prevent patient dumping. However, lack of enforcement of these legislative enactments makes patient dumping an ongoing problem. Further, hospitals are continuing efforts to find ways of bypassing the requirements of EMTALA. For instance, by rerouting patients before they arrive at the hospital, a hospital can avoid EMTALA's requirements. *212 Consequently, patient dumping continues to be an issue that plagues African Americans.
Other evidence of various racial barriers to access is the segregation that exists in facilities. For instance, nursing homes are the most segregated publicly licensed health care facilities in the United States. Racial discrimination, some commentators assert, is the major factor explaining that type of segregation. While African Americans constitute only twelve percent of the nation's total population, the African American poverty rate (31%) is three times greater than the European American poverty rate (10%). However, African Americans constitute only twenty-nine percent of the Medicaid population and twenty-three percent of the elderly poor. More significantly, Medicaid expenditures for African Americans are only eighteen percent of total expenditures. Only ten percent of Medicaid intermediate-care patients are African Americans.
The data on the actual numbers of White physicians who have offices in the African American community is not available. There are probably very few. Consequently, African American physicians have been an important aspect of filling the availability gap. Furthermore, despite being twelve percent of the population, African Americans are seriously underrepresented in health care professions. Only three percent of physicians in the United States are *213 African Americans; only two-and-one-half percent of dentists in the United States are African Americans; and only a little over three-and-one-half percent of pharmacists are African Americans.
Racial barriers to access can take two forms. Barriers can be based on racist conduct that is intentional, or they can be based on conduct which, although not intentional, nevertheless results in a disproportionate disparate impact on African Americans. Much of the institutional racism historically has moved from intentional conduct to unintentional. While this classification may offer a distinction when assigning fault or culpability, the classification makes little difference to the African American feeling the adverse affects of discrimination. This legacy of a racist health care system persists today in African Americans who are sicker than European Americans and who continue to experience racial barriers to access. These continuing racial barriers reinforce African Americans' distrust of the health care system.
D. Racial Disparities in Medical Treatment
Perhaps the most troubling aspect of institutional racism in the health care system is the occurrence of racial disparities in the types of services ordered by physicians and in the provision of the medical treatment itself. These disparities are well-documented. Despite higher rates of heart disease in *214 African Americans, European Americans are one-third more likely to undergo coronary angiography and two to three times more likely to undergo bypass surgery. Doctors advise African American women to gain less weight than White women during pregnancy. This outdated advice ignores the fact that sufficient weight gain is particularly important for Black women, who are twice as likely as White women to deliver low-birthweight babies. Doctors are more likely to dismiss the use of cardiopulmonary resuscitation (CPR) as a treatment option for African Americans, Asians, and Hispanics, than for Whites. European Americans are five to fifteen percent more likely to receive aggressive treatment. In fact, the most favored patient for long-term hemodialysis is a European American male between the ages of twenty-five to forty-four. A European American on dialysis is two-thirds more likely to receive a kidney transplant than a non-European American. Middle-income African Americans are less likely to receive a kidney transplant than middle-income European Americans. Elderly Blacks have greater difficulty obtaining care than elderly Whites, even though both groups are covered by the federal Medicare program. Hospitalization and death rates are *215 higher among elderly African Americans than elderly Whites. Of Medicare hospitalizations, African Americans are more likely to receive substandard care than other elderly patients and are more likely to be discharged while still unstable. When hospitalized with pneumonia, African Americans were less likely than European Americans to receive intensive care. This disparity in medical treatment persists even after controlling for clinical characteristics and income. African Americans with HIV are less likely than whites to receive drug therapies used to prevent pneumonia, a major killer of HIV-infected people. The problem exists without respect to income, education, or health insurance status.
African Americans receive health care treatment different from the preferred patient, the European American male. Whether this difference is based on individual prejudices or medical school training, it is evidence of institutional racism that cannot be tolerated. Any patient seeking care from a physician should be able to be assured of the most appropriate medical treatment available. Irrespective of race, each patient should be assured that the physician will act in the patient's best interest. Every person should be assured that the physician will not let personal prejudice or medical prejudice influence the medical treatment. Under the current situation, an African American does not have those assurances. Is there any wonder that African Americans do not trust the health care system?
E. Human Genome Project and Genetic Testing
The Human Genome Project is a group of research projects, organized under the supervision of the federal government, devoted to the long-term goal of identifying all the genes of the human body. There are both positive *216 and negative ramifications of the Human Genome Project. The positive ramifications can be grouped into those which promote general scientific interest, and those that advance the diagnosis of disease and advance disease treatment. The negative ramifications include the potential for providing a basis for a eugenics program, problems with invasion of privacy, and problems with genetic testing. It is generally agreed that the potential for discrimination is significant and serious. The discriminatory use of genetic information is particularly relevant in the context of schools, employers and employees, and insurers. But what few acknowledge is that African Americans will be disproportionately affected by any genetic discrimination.
There are three primary issues facing African Americans. Historically, European Americans have used genetic information to reinforce negative stereotypes about African Americans. Second, given the racial barriers to access and the racial disparity in medical treatment, the potential benefits of *217 gene mapping will be also be racially distributed. Third, given the disparate health status of African Americans, the money being used to support gene mapping should be used to address the social conditions which contribute to current health status problems. Developing a technology such as the Human Genome Project in a racist society would be like developing a bomb and giving it to a child. The United States has had a long history of using genetics in attempts to subjugate African Americans. Yet, as usual, the fears of African Americans are, at best, put on the back burner and are, at worst, discounted as unreasonable.
F. Managed Care
Insurers, both private and government, are electing to ration health *218 insurance products that manage the patient's care. They do it through managed care products such as health maintenance organizations (HMOs), preferred provider organizations (PPOs), and individual practice associations (IPAs). As currently operated, these managed care products may cause more harm than good to African Americans. It is important to remember that managed care products have not developed in response to the poor health status or the lack of access to health care of African Americans, but rather to third-party payors' and employers' desire to control expenditures. The primary mechanisms that managed care products use to reduce expenditures are strict utilization review and financial risk-shifting. These mechanisms may operate in direct conflict to the goals of improving the health status of African Americans.
Strict utilization review requires the prospective denial or modification of health care services. Financial risk-shifting is the mechanism which ensures that doctors and providers will act as gatekeepers to health care services. It is assumed that the gatekeeper will continue to order necessary care and that only unnecessary care will be cut. Unfortunately, the definition of unnecessary services will, at best, be based on some statistical norm of the general population. At worst, it will be based on standards that are a result of studies on a middle-class, European American, fairly healthy, male population.
Regardless, managed care products will ultimately change the perceptions and expectations of society, physicians, patients, and third-party payors regarding what is owed to whom, what treatments are appropriate in what circumstances, and even what qualifies as a disease. These altered perceptions may be contrary to the needs of African Americans and, without safeguards, could work to worsen the existing disparity in health status between European Americans and African Americans.
Quality assurance, utilization review, and practice parameters are essentially designed around data based on middle-class populations who generally have had good, if not excellent, access to health care services. African Americans have definitely not had excellent access to health care services. That lack of access coupled with other issues affecting African Americans--racism,TE,*219 15 St. Louis U. Pub. L. Rev. 219>>--racism, homelessness, violence, drugs, etc.--means that they will come into managed care products with poorer health status and needing more, not less, health care services. In a system focused on decreasing utilization, it seems difficult to imagine that African Americans will receive more health care services, while others receive less. If managed care products do not provide culturally relevant care, then African Americans may have technical access to health care, but not quality health care.
Beyond these problems with utilization review and financial risk shifting, managed care products' continued focus on cost containment may be inherently antithetical to the needs of African Americans. Just as insurance had a perverse influence on health service delivery, so shall managed care products. Since third-party payors will make more when they treat less and spend less on hospitals and providers (infrastructure), they will, over time, tend to place increasingly stringent requirements on providers; they will fail to develop more expensive, but culturally appropriate treatment modalities; and they will refuse or minimize the expenditures necessary to develop adequate infrastructure for African Americans. If health providers and health organizations that serve the underserved population do not insist that the provision of culturally competent care be a basic component of any managed health care product, African Americans will not benefit as much as we hope from this so-called health care reform. Yet, these concerns are often ignored or minimized by most bioethicists. It will not be easy to trust managed care organizations to operate in any way but a discriminatory way.
G. Organ Transplantation
African Americans have disparate access to organ transplantation. African Americans wait almost twice as long as European Americans for their first transplant--13.9 and 7.6 months, respectively. Although European Americans represent only sixty-one percent of the dialysis population, they *220 receive seventy-four percent of all kidney transplants. In 1988, African Americans represented 33.5% of dialysis patients, but only 22.3% of kidney transplants went to Black patients. In fact, in any given year, European American dialysis patients have approximately a seventy-eight percent higher chance of receiving a transplant than African American dialysis patients. Most bioethicists attribute this disparity to African Americans' failure to donate organs. For instance, in 1988, Blacks donated only twelve percent of living-related transplants and only eight percent of cadaveric kidneys. However, this disparity also exists because of the level of mandated antigen matching required, a level that may be unnecessary for successful transplantation.
Organ transplantation presents two conflicting problems for African Americans. African Americans do not have equitable access to available organ transplants as do European Americans. They are on waiting lists almost twice as long as European Americans, even when such factors as blood type, age, immunological status, location, and the decreased organ donations by African Americans are taken into account. In part, this is due to allocation rules such as antigen matching rules which favor European Americans. However, there are alternative allocation rules that could reduce, if not eliminate, the racial disparity in access to donated kidneys.
The most common reasons for donor reluctance include: lack of information; religion; distrust of medical professionals; fear of premature death; a preference to donate only to members of the same race; and the failure of health care professionals to ask African American families for consent in an effective way. The fear of premature death is fueled by popular shows and *221 community rumors: In a fairly recent Law and Order telecast, a rich White man bought his daughter a perfect kidney from the surgeon. The surgeon obtained the organ by taking a medical team to a park and mugging a preselected victim. The victim was an African American man. Moreover, a popular story in the African American community is of a Hispanic man who was found mugged on the streets. When the ambulance took him to the hospital, he was declared brain dead and his organs were removed before his family was notified.
Thus, popular folklore fuels the fear of African Americans. In fact, it is not an unreasonable fear. The world's most enduring line of human cell cultures-- used to test the polio vaccine, new drugs, and potential cancer cures--was taken without informed consent from a Black woman in Baltimore who was treated for cervical cancer at Johns Hopkins Hospital in 1951. The cancer killed Henrietta Lacks, but the HeLa cells grown from her flesh live on in labs throughout the world. Laws in Pennsylvania, California, Florida, Michigan, Ohio, and Texas allow the coroner's office to remove eyes and brains from the bodies of the dead without prior consent or permission from next of kin. More often than not, African Americans are most affected by this law. Given the current level of mistreatment based on race, there is no reason why African Americans should believe that their bodies will not become a source of organs for European Americans.
*222 H. Reproductive Technology
African American women like most women seek reproductive choice. They want the power to make genuine choices about their reproductive health. However, we tend not to have that choice because choice involves more than a right to an abortion; it involves the real ability to exercise the choice to have healthy children or not to have children at all. To have real reproductive choice, African American women, at a minimum, would need access to reproductive health care, including prenatal care; access to infertility services; freedom from coerced or ill-informed consent to sterilization; economic security, which could prevent possible exploitation of the poor with surrogacy contracts; freedom from toxins in the workplace; healthy nutrition and living space; and the right to safe, legal, and affordable abortion services.
1. Reproductive Health--Workplace Toxins
African American women are less healthy than European American women, due in part to our overrepresentation in jobs that have high levels of workplace toxins. How to protect the reproductive health of women is a significant legal issue that will disproportionately affect African American women. The *223 leading case on the issue, United Automobile Workers v. Johnson Controls, Inc., does little to help. Certainly, the decision protects women from forced sterilization in order to maintain higher paying jobs. However, because the decision does not address the work conditions which threaten the health and safety of women and their fetuses, African American women could be rendered infertile simply by doing their jobs. Reproductive health of African American women will continue to lag behind European American women as long employers are allowed to evade their responsibility for maintaining toxic-free environments.
2. Reproductive Health Care
The lack of adequate prenatal care has resulted in both high maternal and infant mortality rates. In 1986, African American women were 3.8 times more likely than White women to die from pregnancy-related causes. Nearly one African American baby out of ten is born to a mother who received late or no prenatal care. Among African American teenage mothers under age fifteen, the proportion increases to two in ten.
On December 10, 1990, the United States Food and Drug Administration (FDA) approved for general use in the United States the contraceptive Norplant, a long-acting drug. The potential abuse of Norplant is enormous and already apparent. On December 12, 1990, the Philadelphia Inquirer published an editorial entitled Poverty and Norplant: Can Contraception Reduce The Underclass? All fifty states have already incorporated *224 Norplant into their welfare systems, providing either reimbursement for the cost of Norplant to women on Aid to Families With Dependent Children or a cash bonus for those women who agreed to be implanted with the device. A number of high schools considered offering Norplant to teenage girls in order to prevent teenage pregnancy. The courts and legislatures have considered conditioning probation on the acceptance of Norplant. These Norplant proposals aimed at poor, African American women are based upon the concept that poor, Black women are deviant and thus less deserving of motherhood than White women.
Real women were expected to be pious, pure, submissive, and domestic, middle-class and white. Black women, on the other hand, were presumed to conform to an entirely different set of characteristics-- characteristics which precluded them from ever being seen as ideal women. Generally, four controlling images of African-American women have emerged, all of which deviate from the middle- and upper-class standard of womanhood: (1) mammy, the faithful, obedient, nurturing, and caring domestic servant; (2) the matriarch, who is overly aggressive, unfeminine, and emasculating; (3) the welfare mother, who is irresponsible, lazy, and immoral; and (4) the Jezebel, who is sexually aggressive. . . . As a result, African-American women are seen as somehow less female, perhaps even less human as well. Thus, they are not maternal nor are they deserving of motherhood.
*225 4. Sterilization As discussed supra, African American women have not had genuine access to voluntary sterilization, but have been victims of involuntary surgical procedures that strip them of their ability to reproduce. After the abuses of the 1970s, the Department of Health and Human Services adopted regulations to ensure that informed consent was obtained for all federally funded sterilizations. However, there is inadequate monitoring of the consent regulations, and whatever data is collected is not published or made publicly available.
5. Infertility Treatment
The ability to have children is as important as the ability to prevent having children. Yet, discussions of reproductive issues concerning African American women seldom include the need for infertility services. This is a significant issue because the risk of infertility is one and a half times greater for African Americans than for Whites. Yet, seventy-five percent of low-income women in need of infertility services have not received any services. Given that the average fee for each infertility treatment is between $2,055 and $10,000, it is no wonder that poorer couples, a disproportionate number of whom are African Americans, do not pursue infertility treatment. While infertility services are covered under Medicaid and Title X, little information is available on the amount of public funds spent on infertility services.
There are two types of surrogacy arrangements. In the first type of arrangement, a couple with the female partner unable to bear children uses the male partner's sperm to inseminate a fertile woman, who becomes the *226 surrogate mother. Because this is a costly arrangement, it is limited to affluent couples who are disproportionately White. While there is significant potential for abuse of poor women, it is not likely that they will be African American, because an egg obtained from an African American woman would produce an African American child. The second type of surrogacy arrangement involves the use of an egg from a female donor who is not the surrogate. The egg is fertilized, then transferred into the uterus of another woman. This woman, the gestational mother, has no genetic connection to the child.
This type of arrangement is significantly more dangerous to poor, African American women. It literally turns women into uterus prostitutes, wombs for rent. It raises the issue of what constitutes motherhood: is it biology, genetics or something else? If African Americans--and other women-- become breeder women for the affluent, it will be painfully reminiscent of slavery and the days of the breeder woman whose feelings for her child, whether born out of love or out of rape, were disregarded when men with power over her made decisions about the child.
*227 IV. Violence as a Public Health Issue
A young Black male's risk of becoming a homicide victim in the United States is one in twenty-seven, compared with one in two-hundred-five for young White males. The risk of becoming a homicide victim for young Black females is four times higher than for young White females in the White community. It is clear that violence in the African American community is a public health issue. However, even as the words public health arise, I have the cloud of the failed federal Violence Initiative to combat.
The Violence Initiative was a proposed federal initiative to combat violence in the inner-city, supposedly by focusing a more efficient effort toward collective policy making. However, the Violence Initiative was based on two disturbing premises. The first was that much of violent behavior in the inner city may have biological or genetic origins. The second premise was that factors of individual vulnerability and predisposition to violent behavior exist--factors that may be detected at an early age. To the African American community, the initiative's intervention and problem-solving policy mandate were to focus on the children of the inner city.
*228 [T]he advent of the federal Violence Initiative threatened the personhood and the voice of African-Americans, and more particularly of African-American children, by fostering biological and reductionist theories of genetic linkage between criminally-violent behavior and inner-city youth. Furthermore, it decontextualized and dehistoricized the idea of violence, and devalued the worth of the African-American child by reinforcing gender and stereotypical concepts of African-American women and men.
The federal Violence Initiative failed because it wanted to focus on the people as the cause of the problem. Yet, a public health approach is warranted if it were to take proactive strategies to counteract the powerful economic and political forces of our society that legitimatize these levels of violence. If we want to reduce violence, we will have to deal with the system that produces violence. Unfortunately, more often than not, a public health approach focuses on the human development in our community. A focus on human development will necessarily be flawed because any actions or behaviors of the black community will be viewed in the historical context in which the American experience with slavery served to legitimize the image of African Americans as unworthy of respect and bodily integrity, and undeserving of psychological well-being. Furthermore, the images of sex and subjugation in the national psyche further legitimized the attempts to link social conditions with genetic deficiencies.
Thus, even though they are free from slavery, Black men and women are bound now by a caste of race and poverty. They are welfare queens, and members of the underclass. They have become mothers and fathers of sons who have been labeled an endangered species, and of daughters who are caught in a cycle of teenage pregnancy. Subsuming and denying the individuality of African-Americans, these images represent inherent and permanent inequality . . . apart from any environmental influence. The social value of African-American children has never been recognized, and now their economic value is recognized as marginal or as having ceased to exist. Black people bear children who, by their very existence, become the tools for their own destruction, the murderers of their own spirits. These children become individuals who are seen as obsolete. African-American men and women in the inner city give birth to disposable children.
V. Implication of an African American Bioethical Perspective
Bioethics addresses the ethical problems posed by modern medicine and *229 biotechnology. Bioethics is not a single, distinct academic discipline, but is comprised of practitioners from medicine, philosophy, theology, law, nursing, medical history, medical anthropology, medical sociology, and related fields. While bioethics lacks a single, accepted methodology, it has traditionally focused on mid-level ethical principles, such as autonomy, beneficence, justice, and nonmaleficence.
These principles are intended to be a regulative guideline, stating conditions of the permissibility, obligatoriness, rightness, or aspirational quality of actions *230 falling within the scope of the principle[s]. However, there have been a number of challenges to the content of the principles.
Eurocentric bioethics focuses on the individual, ignoring the interests of others who are intimately affected, such as the family and the community. This focus on the individual is based on a philosophy that regards the self, and only the self, as the end per se. However, the African American perspective views this reliance on ethical egoism to be misplaced. African Americans believe that it takes a whole village to raise a child, and thus, at a minimum, African Americans view ethical egoism to be contradictory to the raising of healthy children. Furthermore, even as adults, none of us function as islands; we all must rely on others for, at a minimum, reaffirmation of our self-assessment.
Second, Eurocentric bioethics embraces Kantian ethics, which are antithetical to Afrocentric bioethics. Kantian ethics require universal norms and an impartial perspective, which is inattentive to relationships and community. Kantianism privileges abstract reasoning over virtue, character, and moral emotions. Kantian ethics maintain that the only way we can morally constitute ourselves is by free and rational choice. It is the exclusivity of that claim that is troubling. African Americans believe that we morally constitute ourselves not only through free and rational choice but also through our parents and our community.
Third, Eurocentric bioethics tends to view the patient or research subject generically, without attention to race, gender, or insurance status. As a result, the development of laws and bioethical principles, discourse, and *231 practices are informed by the values and beliefs of one group: White, middle-class, males.
Eurocentric bioethical principles such as autonomy, beneficence, and informed consent do not have the same force when viewed through the African American bioethical perspective of distrust. These principles leave considerable room for individual judgment by health care practitioners. The flaw of a principle-based paradigm is that very judgment. The application of the principles will be subject to other values held by the society. In a racist society (such as ours), the judgment is often exercised in a racist manner.
Thus, Eurocentric bioethics has adopted rules and has applied them with little, if any, concern for how race or other characteristics affect the working of the rules. In fact, numerous studies have documented a disparity between traditional bioethical practice and the needs of minority populations. For instance, African Americans notably differ from European Americans, both in their unwillingness to complete advance directives and in the desires expressed regarding life-sustaining treatment. Substantially more African Americans and Hispanics wanted their doctors to keep them alive regardless of how ill they were, while more . . . whites agreed to stop life-prolonging treatment under some circumstances. . . .
Eurocentric bioethics fail African Americans because bioethicists believe, first, that people behave in ways that can so far be predicted a priori that empirical evidence about their behavior is superfluous and, second, that people *232 think and act rationalistically, seeking always to maximize and exercise autonomy. Furthermore, when dealing with bioethical concepts, courts have shown little interest in dealing thoroughly with empirical evidence, or the effects of judicial doctrines. However, the reality is very different. People act in ways that are more consistent with the values they hold, rather than following any particular bioethical principles. And racism is a *233 strongly held value in our society.
African Americans have been experimented on without consent, thus violating the principle of autonomy. We have been treated and experimented on in ways which have caused us harm, thus violating the principles of nonmaleficence and beneficence. We have been given different treatment and provided different access to health care, thus violating the principle of justice. At best, the judgment in applying the articulated principles has been exercised fairly consistently in a manner which disadvantages and harms African Americans.
The implication for the African American community is the failure of bioethical problem-solving to take into consideration those factors important to solving problems in the African American community. Most of the problem-solving has been at odds with the affirmation of the African American individual and the African American community. In fact, for the most part, mainstream bioethicists have consistently neglected to comment on the social ills or injustices such as the [African Americans'] enslavement, the injustices and discrimination they have suffered, the stereotyping of their language and culture, and their disadvantaged economic, political, educational, and health *234 status. As a result of this lack of affirmation, or, this oppression, we are in danger of losing our own perspectives--our own gifts.
The continued destruction of the African American community results from the lack of consideration given to our perspectives. The African American community has a history--and a present context--that is characterized by medical mistreatment and health care exploitation. European Americans have a history that is racist and conspicuously indifferent to community, religion, virtue, and personal experience. African Americans face the health care system with anxiety, fear, and disaffection. Such anxiety, fear, and distrust will not be alleviated until bioethics constructs a practical, ethical approach to the anxiety and fear which would lead to community empowerment. Such a practical approach would require behaviors such as: reinstatement of community hospitals; assuring urban perinatal health care; encouraging traditional lay-midwifery; and reestablishing the extended family. *235 However, such practical approach must be based on not only on the traditional Eurocentric principles but also on:
recognizing the needs of the community and not just the individual self;
formulating bioethical and legal solutions involving both the family and the community; aggressively training health care providers and institutions about the African American perspective, thus making the barrier of distrust easier to overcome;
eliminating the disparities in health status;
aggressively reducing the existing disparities in health care delivery in the African American community.
One problem that some bioethicists may have with acknowledging an African American perspective is the failure of all African Americans to concur in a description of an ethical belief system. However, such a requirement is not necessary or even possible. Not all individuals of any group will believe or act alike. No one expects that all European Americans accept the dominant view in their culture. Nevertheless, a view may be an accurate description of some significant aspect of European American culture. However, my experience shows that attempts to assert, define, and explain the impact of bioethical or legal behavior on African American culture is met with resistance. European Americans often base the resistance on an assertion that such perceptions about African American culture are not representative. I often wonder if this resistance is based on some attempt--unconscious or conscious--to avoid having to truly structure a multi-cultural society and keep the Eurocentric view dominant. Until bioethicists begin to explicitly address these concerns, African Americans are not likely to begin to place their trust in the American health system. Ultimately, bioethicists must recognize the existence of a spirit, a set of social structures and norms in African American life that are worthy of acquisition by Blacks and Whites.
[FNa]. Professor of Law, The University of Dayton School of Law. J.D., 1987, Lewis and Clark College--Northwestern School of Law; M.S.N., 1978, University of Washington; B.S.N., 1972, University of Texas