BIOETHICS: AFRICAN-AMERICAN PERSPECTIVES

The type of healthcare delivery system used by a society says a great deal about what that society thinks of its most vulnerable citizens. African Americans in U.S. society have historically been treated unfairly in every dimension of group and individual life—subjected to segregated and inferior medical services, housing, employment, education, as well as racist environmental policies and practices. These are all factors that determine the collective and individual health of African Americans, which has been, and continues to be, worse than that of white people in the United States.

Until recently, mainstream bioethics paid little attention to the role of race, racism, and ethnicity in bioethical discourse. As opposed to specific issues like stem cell research, abortion, or end-of-life discussions, race plays a role in every ethical conundrum from violation of informed consent to allocation of organ donations. Notably, over the last few years, more bioethicists are devoting serious scholarship to the examination of race as a topic for debate.

An African-American perspective on bioethical issues brings to the table concerns that are important to the health and well-being of African Americans, concerns that are marginalized in mainstream bioethics. They include racial disparities in health status; racial disparities in access to healthcare and technologies; continued medical research abuses; and other factors contributing to poor health such as toxic dumping in communities of color, poor housing, dangerous jobs, and lack of adequate health insurance. African-American perspectives address a major principle: The health disparities of U.S. racial and ethnic groups are a fundamental bioethics issue.

Bioethics Perspective I: Health Disparities

What are health disparities and why are they ethical violations? Olivia Carter-Pokras and Claudia Baquet discuss a number of definitions that have emerged since 1985, when the U.S. Department of Health and Human Services issued the Report of the Secretary's Task Force on Black and Minority Health. The Task Force defines health disparities as excess mortality of minorities as compared to that of whites. Healthy People 2010, whose goal is to eliminate disparities, defines them as differences that occur by gender, race or ethnicity, education or income, disability, and residence in rural localities. The National Institutes of Health (NIH) defines disparities as differences in incidence, prevalence, mortality, and burden of disease (Carter-Pokras and Baquet).

According to reports from the Centers for Disease Control (CDC), African Americans have higher death rates than whites due to cancers, diabetes, cirrhosis, homicide, AIDS, and cardiovascular diseases. Maternal death is between three and four times higher for black women than for white women. More white women have breast cancer, but the death rate is higher in black women and is increasing. The excessive rates of illness contribute to the higher mortality rate of African Americans; the National Vital Statistics Report puts life expectancy for white women at 80.0 years;74.9 years for black women; 74.8 years for white men; and for black men it is 68.2 years (Arias).

Beginning with slavery and continuing throughout the twentieth century, a persistent and disturbing gap has characterized the health status of African Americans and whites. At emancipation public health officials predicted that freedom would lead to the extinction of the former slaves, who did, in fact suffer numerous health problems, including tuberculosis, malaria, excessive malnutrition, pellagra, and syphilis. The disparities continued throughout the twentieth century and into the beginning of the twenty-first.

A number of reports and policies established goals and recommendations to improve the alarming state of African Americans' health. With the launching of Medicare and Medicaid in 1966, the health of blacks improved, as did that of whites, but the health gap remained. In 1985 the previously mentioned Task Force made recommendations for reducing the disparities. In 1990 the American Medical Association (AMA) Council on Ethical and Judicial Affairs published an influential and much cited article on the disparities. In 1998 President Bill Clinton established the Initiative to Eliminate Race and Ethnic Disparities in health by 2020.

Despite some improvement over the years, the health gaps persevere and in some instances have gotten worse as the twenty-first century began. In 1970 infant mortality in blacks was twice that of whites; at the beginning of the twenty-first century, black infant mortality is still twice that of whites. In 1970 deaths due to asthma were about three times higher in blacks; at the beginning of the twenty-first century, deaths due to asthma have increased: They are now five times higher than in whites (Centers for Disease Control, 1996). Researchers Robert Levine and his colleagues report that the disparities have not improved since the end of World War II, despite decades of funding for health-related programs.

Some observers attribute the health gap to biology, suggesting that excess infant deaths and disproportionate incidences of lung cancer and breast cancer deaths are due to genetic differences. Others attribute the high rate of sickness and death to irresponsible lifestyles. According to this explanation, African-American women and men refuse or neglect to get timely cancer screenings until it is too late to curb the spread of the condition, or they prefer to smoke high-nicotine content cigarettes and drink high-alcohol content liquor that increase lung and liver disease (Moore, Williams, and Qualls). Still others attribute the disparity in health status to cultural attitudes and deficits that prevent health-seeking behaviors that take advantage of available health services; patient and family beliefs at variance with those of medical professionals; and negative attitudes toward healthcare providers. This explanation, for example, asserts that African Americans prefer dialysis to a kidney transplant (Ayanian et al.). In particular, many authors single out suspicion of the healthcare system as a barrier to seeking care. Indeed, many African Americans fear that they will become guinea pigs for unethical medical research (Thomas and Quinn; Dula).

Health researchers are beginning to acknowledge that health disparities do not merely reflect class, lifestyle choices, or genetics. They are also a result of current and accumulative racism and discrimination in U.S. society (Peterson et al.). Yet the word racism is grudgingly used even though it is a statistical fact that one's race often determines the quality and quantity of services, procedures, and healthcare that one receives. Health disparities must be understood as a bioethical issue if they result in more sickness and shorter life spans for African-American populations as compared to white populations. If these disparities are a result of racial discrimination, they ought to be ethically unacceptable in a just society.

Bioethics Perspective II: Race and Racism in Access to Healthcare

Differential treatment based on race or the group to which one belongs is an ethical problem because such treatment usually has a negative impact on life opportunities, education, and physical and mental well-being. African Americans have always been sicker and lived fewer years than whites; they have historically had—and continue to receive—different, unequal, and inferior access to healthcare. The prestigious Institute of Medicine's (IOM) March 2002 report evaluated over 100 studies focusing on health disparities published over the previous ten years. The IOM panel found that minorities who have the same income, education, medical conditions, and insurance as whites still receive poorer care than do the latter, showing that race is a significant variable in the health and healthcare of African Americans. Even though heart disease is a top killer of African Americans, whites get more aggressive treatment. Blacks with coronary heart disease are significantly less likely than whites to undergo bypass surgery, angioplasty, and a host of other services and procedures. Differential and racist treatment regarding kidney transplants, intensive care unit (ICU) treatment, and even the kind of information provided to pregnant women of different races have all been thoroughly documented.

Differential treatment is illustrated in government programs that provide health insurance for poor people on Medicaid, elders insured by Medicare, and U.S. veterans. In these systems, no money is passed between patient and provider; thus, one assumes that patient enrollees in these three programs would be treated fairly, regardless of race. Studies of the distribution of services under all three programs show that blacks get a lower quality of care that whites. Under Medicare Managed Care, African Americans are less likely to receive breast cancer screening, diabetic eye examinations, beta-blockers for myocardial infarction, and mental health follow-up (Schneider, Zaslavsky, and Epstein). In Veterans Administration (VA) hospitals, black U.S. veterans get substantially fewer treatments for Acute Myocardial Infarction (AMI) than do white veterans and are less likely to undergo cardiac catheterization and to receive coronary bypass surgery (Peterson et al.). Medicaid too offers differential and substandard treatment to people of color. African-American children have a disproportional incidence of asthma; prevalence is twice that of whites, and death rates between 1980 and 1993 were four to six times higher (Centers for Disease Control, 1997; National Institute of Allergy and Infectious Diseases). Yet black and Latino children with worse asthma status are prescribed fewer preventive asthma medications than are white children within the same managed Medicaid plan (Lieu, Lozano, and Finkelstein).

Government programs also perpetuate disparities in health status and access to services in other ways. Due to federal medical criteria, African Americans receive proportionately fewer kidneys and they wait twice as long for them as whites. World-renowned transplant surgeon Thomas Starzl and his colleagues report that the national kidney allocation system inherently favors white patients because of the heavy emphasis placed on donor-recipient compatibility. They argue that antigen matching should not weigh so heavily in deciding who gets a kidney since differences in survival rates (the justification for current donor allocation) are negligible (Starzl, Aliasziw, and Gjertson).

Whether disproportional access to healthcare and services is intentional, it is clear that race is a factor in the delivery of healthcare in the United States. Although discussions of racism in healthcare and services have been prominent in other academic disciplines, it has been insufficiently explored in the area of bioethics. Differential treatment in access to healthcare is unassailably a bioethics issue.

Bioethics Perspective III: Informed Consent and Racism in Research

Informed consent in research is an ethical principle that has particular relevance to African Americans and similarly vulnerable populations. Throughout the history of this country, medical research has supported racist social institutions. The Tuskegee Syphilis Experiment (TSS) is the most egregious violation of informed consent against a specific group of people, but it certainly is not an isolated example. Enslaved women were used to conduct painful research on urine leaks into the vagina and black women were used to perfect Cesarean sections (Reverby). More recently, President Clinton's Advisory Committee on Human Radiation Experiments observed that in several studies, research subjects were disproportionately chosen from minority populations. Questions have also been raised about an early 1990s measles vaccine trial that involved mostly minority children in several inner cities (Marwick). All these studies are examples of research without consent.

Although blacks have been over-represented in unethical research, generally they have been excluded from ethically conducted research studies that might benefit future populations of African Americans. In an attempt to remedy this, the NIH Revitalization Act of 1993 mandated that women and minorities be included in federally funded research. However, during the ten years since the enactment, despite attempts at aggressive recruitment, researchers still have difficulty enrolling African Americans in clinical trials. Low participation is due to mistrust of the medical/scientific community because of real and perceived medical abuse; poor access to primary care physicians who make most referrals to trials; scarcity of minority health professionals who might facilitate enrollment; potential enrollees' lack of knowledge about clinical trials; and language and cultural barriers. The most significant factor that contributes to low participation in clinical trials is African American suspicion of the healthcare system. Until researchers understand the psychic, physical, and emotional damage done by racism in medicine and in the larger society, they will continue to have trouble recruiting African Americans for research. Despite possible benefits from research, an African-American perspective reminds one that research still offers a potent possibility for continued abuse.

Bioethics Perspective IV: Difference and Biology

One goal of the TSS was to show that the course of syphilis was different in blacks, suggesting biological differences between blacks and whites. Similarly, an underlying motive behind the enactment of the aforementioned NIH Revitalization initiative was that minorities and women sometimes respond differently from white men to the same drug, again suggesting the possibility of biological difference among races.

Belief in biological difference has long been used to justify different treatment in social arrangements. Aristotle said that from their birth, some people were set out for subjection and others to rule. Slaves were to be ruled by their masters, women by their husbands, and children by their parents. Difference has been used to establish authority and hierarchies; dominance and subordination; superiority and inferiority; the rulers and the ruled; us and them; good and evil; the beautiful and the ugly; and the civilized and the savage. Concepts of difference have been used to oppress, exploit, maintain the status quo, strip people of their rights, and prevent them from making decisions regarding their own well-being. For the most part these hierarchies in the United States have separated whites from nonwhites.

The construction of difference or the other was used as a rationale so that one group—the group in power—could do as they wished with another group. The political uses of difference led to slavery, colonialism, racism, classism, and sexism, as well as other atrocities and racist brutalities like lynching, rape, medical neglect, and research abuse. The construction of the other worked well for those in power; if people were biologically different—not quite human—they did not have to be treated as moral agents. This of course was part of the implicit justification for the TSS. The men were different (they were black), so they could be treated differently.

Scientists have long been fascinated with the possibility of genetic differences between blacks and whites and they continue to search for black genes that explain disproportionate susceptibility to breast and lung cancers, heart disease, violent behavior and intelligence deficits, poverty, and the relation between race and detrimental health effects of environmental pollution.

In the March 20, 2003, issue of the New England Journal of Medicine, two articles highlight the controversy surrounding race and disease susceptibility. On the one hand, Esteban Gonzalez Burchard and his colleagues argue that there are racial and ethnic differences in the causes and expressions of various diseases. Richard Cooper and his colleagues, on the other hand, see race as a social category, not biological, and think that doctors have been too quick to suggest genetics as the reason for the greater susceptibility of African Americans to certain diseases. As with the TSS, race is again explicitly linked to ideas of biological differences between racial and ethnic groups (Cooper, Kaufman, and Ward).

As the debate about biology and disease susceptibility continues, the TSS is a reminder of the hazards of research on race-based differences. Genetic explanations often neglect or gloss over the interactions of genes and the environment. It is important to remember that when blacks receive comparable treatment for lung cancer or breast cancer, their survival rate is comparable to that of whites (Bach, Schrag, and Brawley) and that when black VA patients receive the same treatment as whites, they also receive a survival advantage (Jha et al.).

Bioethics Perspective V: The Colorblindness of Bioethics

Bioethicists, in efforts to be colorblind, white out the experience of color as a bioethical issue, as well as the harmful effects of racism on health. A colorblind bioethics has the unfortunate potential of increasing health inequalities if it recognizes only the larger ethical issue in a policy or practice, and not also how that policy might affect less dominant populations. When ethicists ignore race, they remove racism and its effects on health from ethical debate. In a sense, a colorblind bioethics is misleading because it makes judgments based on incomplete information. Regrettably, race and racism are not high priority topics in bioethics.

The TSS is the paradigm case of the intersection of race, bioethics, and the healthcare system. In Macon County, Alabama, between 1932 and 1972, the U.S. Public Health Service conducted a study involving 399 African-American men and 200 controls to determine the course of untreated syphilis in the male Negro. During the study the men were told that they were being treated for bad blood. When the case came to public attention in 1972, a great deal of the bioethical discussion and debate centered around the lack of informed consent; deception and lying; the ethical and scientific benefits of research; the ethics of withholding treatment once penicillin became available; and the ethics of active intervention to prevent treatment. At the time of public disclosure of the study, there was little analysis of racism as a bioethics issue, even though the ethical violations clearly involved only black men and their families. The early failure to address the racism underlying the experiment illustrates the misguided colorblindness of bioethics.

Certainly mainstream bioethicists have done extremely valuable work from which society as a whole has benefited. Nonetheless white bioethicists have defined and shaped the field, deciding what is important. The interests, problems, and standpoints of those in power have obscured the unique concerns—race and racism in the healthcare system and in society at large—of African American and other people of color.

Happily, this is changing. More mainstream bioethicists are stepping outside their traditional role as white bioethicists, to consider race, racism, and white privilege as a valid bioethics concern. Bioethicist Catherine Myser—in an article dedicated to the late African-American bioethicist Marian Secundy—argues in the 2003 Spring issue of the American Journal of Bioethics that the cultural construction of bioethics in the United States has not sufficiently questioned the dominance and normativity of whiteness. The September–October 2001 issue of the Hastings Center Report also presented several articles on race and bioethics, including pieces by historian Susan Reverby and bioethicist Lawrence Gostin. Editor Greg Kaebnick comments on the movement of bioethicists to consider little talked about topics like race. Reverby revisits the TSS, and Gostin discusses the rights of pregnant women drawing on the late 1980s Medical University of South Carolina policy, which tested poor black pregnant women on Medicaid—without their consent—for drugs.

This entry has focused on some issues that make up a framework for African-American bioethcs: the ethics of health disparities, unequal access to healthcare based on race, and informed consent in research. Other framing issues include religion and suspicion of the healthcare system. Religion and spirituality play dominant roles in the lives of a majority of African Americans and is connected to social change. Any worldview that ignores this will fail to represent African-American reality. Also, any worldview that purports to represent African-American perspectives must take into account the widespread suspicion of the healthcare system. Suspicion has inhibited African Americans from participating in clinical trials for fear of being used as guinea pigs; it has led to false beliefs that the U.S government purposely infected the TSS men with syphilis; and it is responsible for the belief that the U.S. government is capable of genocide of the black population. Some think suspicion keeps African Americans from seeking timely care. The source of the suspicion resides in historically abusive treatment of African Americans at the hands of the healthcare system and the larger society. Annette Dula and Sara Goering's 1994 book "It Just Ain't Fair": The Ethics of Health Care for African Americans outlines additional considerations for African-American perspectives on bioethics.

When examined in this framework, from this perspective, every bioethics issues has a race/ethnicity element. For example, an African-American perspective challenges mainstream assumptions around end-of-life discussions. One mainstream assumption is that at the end of life, people will get unwanted healthcare that will compromise their dignity. Many African Americans believe the opposite; they are afraid that they will not get any treatment, let alone unwanted treatment, at the end of life. As a result they want all the care they can get at the end of life, even if it makes no sense. Given the lack of fair access to healthcare, the fear makes sense. Another assumption around end-of-life care is that people want to die with dignity. Mainstream bioethics associates dignity with quality of life. Most African Americans prefer quantity to quality of life, challenging the mainstream definition of dignity. Again this is reasonable since quantity of life for blacks has always been less than that for whites, and is often due to unfair practices of the healthcare system.

In a March 6, 2002, News Release, the Commonwealth Fund reported that African Americans are more likely than whites to experience difficulty communicating with physicians and to feel as if they were treated with disrespect when receiving healthcare. The doctor–patient relationship influences the quality of communication and health outcome. Doctor–patient communication is an important bioethics issue and has generated tomes of information. Just as African Americans have less access to healthcare, they also have fewer discussions with their physicians and their visits are less participatory. In many instances there is no meaningful communication because more blacks than whites lack a regular physician.

This discussion is meant not to vilify mainstream bioethics, but to show the need for a perspective and interpretation that focuses on bioethics issues that have a unique relevance for African-American populations.

annette dula

SEE ALSO: African Religions; Christianity, Bioethics in; Genetics and Racial Minorities; International Health; Islam, Bioethics in; Justice; Medical Ethics, History of Africa; Medicine, Anthropology of; Medicine, Sociology of; Minorities as Research Subjects; Organ Transplants, Sociocultural Aspects of; Race and Racism; Research, Multinational

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INTERNET RESOURCES

Arias, Elizabeth. 2002. "United States Life Tables." National Vital Statistics Reports 51(3): 1–39. Available from <http://www.cdc.gov/nchs/data/nvsr/nvsr51/nvsr51_03.pdf>.

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National Institute of Allergy and Infectious Diseases. 2001. Asthma: A Concern for Minority Populations. Available from <http://www.niaid.nih.gov/factsheets/asthma.htm>.