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.