BY: FR. PETER A. CLARK, SJ, PhD
Fr. Clark is professor of ethics, St. Joseph's University, and bioethicist,
Mercy Health System, Philadelphia.
Racism, Sometimes Overt, Sometimes Subtle, Continues to Plague U.S. Health
Over the past decades, the mortality rate in the United States has decreased
and life expectancy has increased. Yet a number of recent studies have drawn
Americans' attention to the fact that racial and ethnic disparities persist
in health care. It is clear that the US health care system, which is the envy
of the world, is not only flawed by basic injustices but may in fact be the
cause of injury and death for members of racial and ethnic minorities.
In 2002, an Institute of Medicine (IOM) report requested by Congress listed
more than 100 studies documenting a wide range of disparities in the nation's
health care system. The report said that people belonging to racial and ethnic
minorities often receive a lower quality of health care than do people of European
descent, even when their income levels and medical insurance coverage are the
same as that of the latter.1 Another study,
whose results appeared in the New England Journal of Medicine, found
that although African Americans and members of other ethnic minorities make
up a growing percentage of Americans infected with the virus that causes AIDS,
they are seriously underrepresented in clinical trials of new treatments for
the disease.2 African Americans and Hispanics, the researchers discovered, were
roughly half as likely as whites to participate in HIV treatment trials and
about half as likely to receive experimental medicines. This occurs at a time
when HIV is spreading among African Americans at a higher rate than among whites.
A third study found that African Americans were far less trusting than whites
of the medical establishment—and of medical researchers in particular. African
Americans were 79.2 percent more likely to believe that someone like them would
be used as a guinea pig without his or her consent, versus 51.9 percent of the
whites surveyed.3 This study also found that 62.8 percent of African Americans
(versus 38.4 percent of whites) believe that physicians often prescribed medication
as a way of experimenting on people without consent.
These studies only confirm what many in the minority community have known
for years—that racism, whether explicit or subtle, is alive and well in the
medical profession. It is clear that a subtle, perhaps unconscious form of racism
is just as harmful as expressed hatred and bigotry, because it affects the medical
care of human beings. Although the IOM study found that most health care providers
were well-intentioned, it also cited "indirect evidence" that physicians' decisions
were influenced by their perceptions of race.4
Racism in health care is an issue that should concern everyone in the field.
But it should especially concern people in the Catholic health ministry, because
it is directly related to the Ethical and Religious Directives for Catholic
Health Care Services, particularly to Directives 2, 3, and 23.5
Unless measures are taken to address this racism, unless a new sense of trust
is established between the medical establishment and racial and ethic minorities,
these injustices will continue to deepen and expand and more lives will be placed
in jeopardy. What is needed is a comprehensive, multilevel, culturally relevant
strategy. Developing such a strategy will entail:
- Understanding the causes of racism in the medical profession
- Identifying practical interventions that address this racism in individuals,
communities, and the nation as a whole
- Forming partnerships that will work to develop a new sense of trust between
the medical establishment and the minority communities
THE HISTORICAL CONTEXT
The Conspiracy Motif
The oral folklore tradition is deeply rooted in the African-American heritage.
For generations, a variety of negative stories have circulated in that community
concerning the medical profession and public health programs. In 1972, when
the Tuskegee syphilis study was made public, news about it spread rapidly through
the African-American community.6 The truth about the study was bad enough, but
the problem was compounded as this information spread by word of mouth, exaggeration
and rumor becoming intertwined with the truth. Today, in the African-American
community (and in other minority communities as well), the Tuskegee story is
a major part of the folklore passed down by family elders intent on preparing
younger members to deal with the harsh realities of life. By contrast, very
few white people have even heard of the Tuskegee syphilis study and even fewer
have been affected by it.
Those who study folklore make a distinction between rumor and legend.
A rumor is "a specific proposition for belief, passed along from person to person,
usually by word of mouth without secure standards of evidence being present."7
A legend, on the other hand, "is a narrative account set in the recent past
and containing traditional motifs that is told as true."8 Since certain accounts
incorporate modern motifs as well as traditional ones, most folklorists and
social scientists today use the designation contemporary legend to describe
"unsubstantiated narratives with traditional themes and modern motifs that circulate
orally (and sometimes in print) in multiple versions and that are told as if
they are true or at least plausible."9 Drawing a clear distinction between rumor
and contemporary legend is not always possible.10 I will attempt to make a distinction
here, however, in order to demonstrate the ways rumors and contemporary legends
have affected, first, the oral folklore tradition of the African-American community
and, second, the relationship of that community to the medical establishment.
The ethnologist Patricia A. Turner identifies two distinct but recurrent "motifs
of danger" that have influenced the African-American community in its distrust
of the medical establishment and public health programs.11 The first is what
she calls the conspiracy motif. The conspiracy motif suggests the existence
of an organized plot by the "powers that be" against African Americans—a plot
that first threatens individual black persons and then is translated into animosity
toward the whole race and minorities in general. Turner traces the history of
the conspiracy motif from the European involvement in the slave trade of black
Africans to contemporary "powers that be," including the Federal Bureau of Investigation,
the Central Intelligence Agency (CIA), the Food and Drug Administration, the
Centers for Disease Control and Prevention (CDC), various branches of the armed
services, commercial interests, and the medical and health establishments. This
motif was dominant from the beginning of slavery in the United States through
the late 19th century, Turner says, but it has also appeared in subtle ways
during the past century.
Turner's second motif of danger is the contamination motif, which she
sees as dominant in the 20th century and continuing to be so in the early years
of the 21st. This motif can be seen in some black views of contemporary medical
and public health efforts; at times the motif coincides with the themes of genocide
and conspiracy. Turner uses "contamination" to refer to "any item in which the
physical well-being of individual black bodies is being manipulated for racist
An examination of these two motifs in an historical context will reveal why
suspicion and distrust of the medical establishment and public health programs
is, on the part of African Americans, reasonable. Such suspicion and distrust
is the basis of their reluctance—and sometimes outright refusal—to participate
in new clinical drug trials for AIDS and other experimental treatments.
Medicine has never been an entirely value-free discipline. It has inevitably
reflected and reinforced the beliefs, values, and power dynamics of society
at large. As such, it has been influenced by race and racism both directly and
in subtle ways.13 Evidence of this fact can be seen in the use of medical theories
to justify slavery. Physicians in slaveholding cultures believed that black
people possessed peculiar physiological and anatomical features that somehow
justified their enslavement. These medical theories not only reinforced the
societal attitude that black people were inferior—something less than human—but
also justified the use of blacks for medical experimentation and dissection.14
This is not to say that poor whites were not abused in the United States; the
point is that blacks were used more often and with greater disregard, because
of their race.
In the antebellum South, black bodies were used by medical schools for teaching
purposes. As the ideas of the "Paris school" of hospital medicine reached the
United States, physicians who ran medical schools began to realize that they
had to have human specimens.15 Medical students need living people to study
in order to learn anatomy, recognize and diagnose diseases, treat conditions
requiring surgery, and to try out new ideas and techniques. They also need dead
bodies to perform the autopsies that help them confirm diagnoses and understand
the effects of disease on the human body.16 In the 30 years preceding the Civil
War, fierce competition among Southern medical schools in the recruitment of
students put additional pressure on each school to have an abundant supply of
clinical materials.17 This need for human specimens, both living and dead, was
first met by placing various advertisements in local newspapers. The following
ad, for example, which appeared in the Charleston Mercury between 1837
and 1839, announced the establishment of a special clinic for the treatment
Surgery of the Medical College of South Carolina, Queen Street— The faculty
inform their professional brethren, and the public that they have established
a Surgery, at the Old College, Queen Street, For The Treatment Of Negroes,
which will continue during the session of the College, say from first November
to the fifteenth of March ensuing. The object of the faculty, in opening this
Surgery, is to collect as many interesting cases, as possible, for the benefit
and instruction of their pupils—at the same time they indulge the hope, that
it may not only prove an accommodation, but also a matter of economy to the
public. They would respectfully call the attention of planters living in the
vicinity of the city, to this subject; particularly such as may have servants
laboring under Surgical diseases. Such persons of color as may not be able
to pay for Medical advice, will be attended to gratis, at stated hours, as
often as may be necessary. The faculty takes this opportunity of soliciting
the co-operation of such of their professional brethren, as are favorable
to their subjects.18
Such advertisements led both blacks and poor whites to fear mistreatment in
Southern hospitals. They believed that, if admitted to such institutions, they
would either be treated as experimental guinea pigs or allowed to die so that
autopsies could be conducted on them. The evidence proves that this fear was
After the Civil War, the absence of laws providing for the legal acquisition
of human bodies led the medical profession to resort to illegal means of procuring
cadavers. Bodies were either illegally exhumed from graveyards or bought or
stolen before they could be buried; in some cases, people were murdered so that
their corpses could be sold to medical schools. Of the three methods, grave
robbing was the most popular.19 The term "night doctor" became well-known in
these years, especially in the black community. The term (derived from the fact
that victims were sought only during the hours of darkness) applied to both
medical students and to professional grave robbers who sold stolen bodies to
physicians for medical research.20 The appearance of the "night doctors" coincided
with the post-Reconstruction era, when blacks were migrating to industrial centers.
This migration lasted from about 1880 to the end of the First World War.21 The
folklorist Gladys-Marie Fry contends that "many blacks are convinced that Southern
landowners fostered a fear of 'night doctors' in the post-Reconstruction period
in order to discourage the migration of blacks from rural farming areas to Northern
and Southern urban centers."22 Her theory appears to be historically well-founded.
However, there is also evidence indicating that "night doctors" did in fact
play a major role in the procurement of black bodies for medical purposes.
The oral folklore tradition of African Americans concerning "night doctors"
is widespread, testifying to the influence that belief in their existence had
on blacks living in the United States at the time. Stories about "night doctors"
are still told in the African-American community, and historical research suggests
that many may be true. It is estimated that, in those years, about 5,000 cadavers
were dissected each year in the United States and that at least a majority were
procured illegally.23 By the 1920s, legislation had eliminated body snatching
in most parts of the United States, but that legislation did not substantially
alter the social origins of the supply of cadavers for medical schools.24
Not only did "night doctor" stories and the unethical practices of medical
schools in obtaining bodies foster a fear of the medical establishment among
African Americans; it also reinforced societal attitudes concerning race and
racism. From 1619 until at least the early 1900s, the "powers that be" in the
United States were often involved in a form of conspiracy against African
Americans, both individually and corporately. African Americans were degraded,
threatened, and physically and emotionally abused by many white people, including
members of the medical profession. As a result, many African Americans today,
aware of what occurred in earlier times through oral folklore, have an innate
mistrust of the medical establishment. With the advent of the 20th century,
the influence of racism on the attitudes and values of medical professionals
did not end; it became more subtle. The conspiracy motif in black thinking was
replaced, for the most part, by the motif of contamination.
The Contamination Motif
In the late 19th and early 20th centuries, many medical and public health
journals began to focus on the problem of syphilis among African Americans.25
Racist assumptions and stereotypes still existed within the medical establishment.
Blacks were seen as inferior, a view that continued to be used to justify using
black bodies in ways that white bodies would never be used. The predominantly
white medical establishment maintained that "intrinsic racial characteristics
such as excessive sexual desire, immorality, and overindulgence caused black
people to have high rates of syphilis. . . . Physicians also pointed to alleged
anatomical differences—large penises and small brains—to explain disease rates."26
These racist assumptions became the basis for launching what became known as
the "Tuskegee Study of Untreated Syphilis in the Negro Male."
In 1932 the US Public Health Service initiated a study of African-American
men with syphilis in Macon County, AL, the idea being to track the natural course
of untreated, latent syphilis in black males. The study comprised 399 syphilitic
men as well as 201 uninfected men who served as the control group. These people,
recruited from churches and clinics in Macon County, were led to believe they
would receive free meals, burial insurance, and "special free treatment" for
what they were told was "bad blood." In short, they were enrolled in the study
without their informed consent.
The infected men were neither informed that they had syphilis—a disease known
to cause mental illness and death—nor treated for it. In fact, the researchers,
in order to study the disease's natural course, withheld from the infected men
the standard treatment of mercury and arsenic compounds. In 1947 when penicillin
was determined to be an effective treatment for syphilis, this too was withheld.
The treatment these men actively received came in the form of placebos.
The Tuskegee syphilis study was a covert medical research study. However,
it was widely known in medical circles because articles about it were published
in major medical journals. As late as 1969, a committee at the CDC examined
the study and agreed to allow it to continue.
Not until 1972, when the first accounts of this study appeared in the press,
did the Department of Health, Education, and Welfare (HEW) terminate the experiment.*
At that time, 74 of the test subjects were still alive; at least 28—but perhaps
more than 100—had died directly from advanced syphilitic lesions.27 For many
in the African-American community, news of the study confirmed what they had
long suspected: that the medical profession and the federal government used
various forms of contamination to commit genocide.
* In 1980 HEW was renamed the Department of Health and Human
Services; the CDC was renamed the Centers for Disease Control (which,
in 1992, then became the Centers for Disease Control and Prevention).
Stories bearing the motif of contamination as a form of genocide continued
to spread in the African-American community throughout the 20th century. There
are many in that community who believe today that condom distribution was part
of a government plan to reduce the number of black births.28 This belief became
more credible when Norplant came on the market.29 Following the legalization
of Norplant as a contraceptive device, stories began to circulate that African-American
women who lived in the inner city and were welfare recipients were being forced
to use it. Such stories intensified when various editorial writers and public
policy makers began to suggest that "welfare mothers" be required to have the
device implanted as a condition for further benefits.30
Additional fertility-related measures, such as the sterilization statutes
adopted by many states in the 1970s, also helped perpetuate this notion of genocide
in the African-American community. Tending to reinforce the notion is the recent
finding that a direct correlation exists between the race of a patient and the
availability of certain medical procedures. Various medical studies have shown
that certain procedures—such as renal transplants, hip and knee replacements,
and gastrointestinal endoscopy—are less likely to be performed on blacks than
on other people. On the other hand, blacks are more likely to undergo
such other procedures as hysterectomies, bilateral orchiectomies, and the amputation
of lower limbs.31 Does this represent a subtle
form of sterilization policy? These findings, coming as they do from reputable
medical journals, have only increased African-American cynicism concerning the
Genetic screening and public immunization programs have also raised suspicions
among blacks. The sickle cell anemia screening programs of the 1970s created
misinformation, confusion, and fear. Inadequate planning and preparation on
the part of the medical profession and public health officials—and a failure
to educate the US public on the difference between being a carrier of the disease
and having it—resulted in unnecessary stigma and discrimination. As a result
of this confusion and misinformation, a great suspicion arose in the African-American
community that sickle cell policy was another instrument of genocide.32
The same has been true of public immunization campaigns. Especially widespread
is the fear that certain drugs may be experimental and thus potentially toxic.
Inoculations have been suspected of being vehicles for the introduction of experimental
substances or infectious agents into the minority communities. Even today, health
fairs and "immunization days" sponsored by community-based clinics sometimes
cause concern among African-American and other minority parents. This fear has
been fanned by the circulation in minority communities by books such as Curtis
Cost's vaccines Are Dangerous: A Warning to the Black Community, which
describes vaccination as "purposely injecting loathsome filth from a diseased
animal directly into the crystal-clear blood streams of our precious children."33
As a result, diagnostic tuberculosis skin testing has often been refused, because
it involves injecting tuberculin material directly under the skin. Some believe
that the test is tended to give TB rather than detect it.34
Such misinformation has greatly contributed to the "legacy of mistrust" of the
medical establishment in African-American and other minority communities.
In the later 20th century, the contamination theory also became associated
with the AIDS epidemic. Indeed, many believe that AIDS was conceived as a deliberate
plot to exterminate African Americans and other minorities.35 In a 1990 survey
conducted by the Southern Christian Leadership Conference, 35 percent of the
1,056 black church members who responded said they believed that AIDS was a
form of genocide.36 A rumor found consistently among African Americans is that
the AIDS virus was created in the laboratories of the CIA. According to such
rumors, the virus is either a biological warfare experiment that was tried out
on African Americans and Haitians or biological warfare intended to diminish
the African and Haitian population.37 No matter which form the rumor takes,
it has been devastating in the way it undermines anti-AIDS efforts in the African-American
A recent study has shown that even though African Americans and other minorities
make up a growing percentage of Americans infected with HIV/AIDS, these groups
are underrepresented in clinical trials for new treatments.38 Examining a nationally
representative sample, the authors found that some 14 percent of adults receiving
care for HIV infection had participated in a medical trial or study; of those,
24 percent had received experimental medications and 8 percent had tried and
failed to obtain experimental treatment. According to multivariate models, non-Hispanic
blacks and Hispanics were less likely to participate in such trials than non-Hispanic
whites.39 These findings confirm, the authors write,
that there are disparities among racial and ethnic groups in the rate of
study enrollment, as others have observed in selected populations of patients
with HIV or inferred from the racial and ethnic composition of particular
cohorts; moreover these findings suggest that such disparities persisted up
to four years after the National Institutes of Health issued guidelines for
increasing enrollment of members of minority groups. . . . The effects of
race or ethnic group were seen even within socioeconomic strata, remained
apparent after multivariate adjustment for the level of education, and seemed
to be present in all aspects of access to research.40
Although the authors did not pinpoint a single reason for the racial disparities
seen, they believe that minority communities possess less awareness of and more
negative attitudes about clinical research and experimental medications than
do other communities. "Black persons may interpret informed consent procedures
as 'liability waivers' for researchers to do little to protect patients," they
It is clear that minority communities exhibit a general attitude of mistrust
toward the medical profession. But there is also mistrust of minority communities
on the part of physician-researchers. Researchers tend to "purposely avoid recruiting
marginalized populations (such as members of minority groups, substance abusers,
or homeless persons) to clinical trials because they believe that poor compliance
is common in these groups."42 Is not this avoidance itself a form of racism?
Studies have shown that many of these supposed compliance problems are probably
surmountable and, more important, have not in many cases predicted poor compliance.43
This lack of trust on the part of researchers, which has a long history, contributes
to the disparities seen in the medical care provided to members of racial and
ethnic minority groups. Only through the building of trust will patient involvement
in care, adherence to recommended treatment, and willingness to participate
in clinical research increase.44
Distrust of the medical establishment by minority groups was further confirmed
in another study. In this case, researchers analyzed data from 527 African-American
and 382 white respondents to a national telephone survey on participation in
clinical research. African Americans, this study found, were more likely than
white respondents (41.7 percent to 23.4 percent) to expect their physicians
to give less than a full explanation of research participation; they were also
more likely (45.5 percent to 38.8 percent) to believe their physicians would
expose them to unnecessary risks. African American respondents were in general
more distrustful than white respondents.45
Finally, as mentioned, the March 2002 IOM report showed that racial and ethnic
minorities received a lower quality of health care than whites, even when their
insurance and income were the same as whites. "Even among the better-controlled
studies," the authors wrote, "the vast majority indicated that minorities are
less likely than whites to receive needed services, including clinically necessary
procedures. These disparities exist in a number of disease areas, including
cancer, cardiovascular disease, HIV/AIDS, diabetes, and mental illness, and
are found across a range of procedures, including routine treatments for common
health problems."46 The study found that patients' attitudes, such as their
preferences concerning treatment, do not vary greatly according to race and
so cannot explain racial and ethnic disparities in health care. In addition,
the report's authors write, "There is considerable empirical evidence that well-intentioned
whites who are not overtly biased and who do not believe that they are prejudiced
[nevertheless] typically demonstrate unconscious implicit negative racial attitudes
and stereotypes. Both implicit and explicit stereotypes significantly shape
interpersonal interactions, influencing how information is recalled and guiding
expectations and differences in systematic ways."47
Research suggests that health care providers' diagnostic and treatment decisions,
as well as their feelings about patients, are influenced by patients' race or
ethnicity.48 Whether explicit or unconscious, racism among medical professionals
is a form of bigotry and must be addressed from both a medical and an ethical
Application of Three Principles
The evidence is quite compelling that racial and ethnic disparities in health
care contribute to disparities in care for minorities in the United States.
David Satcher, MD, the former US surgeon general, argues that this evidence
correlates with persistent health disparities in statistics concerning illness
Compared with their white counterparts [Satcher writes], black babies are
twice as likely to die during their first year of life, and American Indian
babies are 1.5 times as likely. The rate of diabetes among Native Americans
is three to five times higher than the rest of the American population, and
among Hispanics it is twice as high as in the majority population. Although
constituting only 11% of the total population in 1996, Hispanics accounted
for 20% of new tuberculosis cases. Also, women of Vietnamese origin suffer
from cervical cancer at nearly five times the rate of white women.49
Satcher contends that although these disparities result from complex interactions
among genetic variations, environmental factors, and specific health behaviors,
there is also reason to believe that race and ethnicity play a major role.50
This is certainly a medical problem, but it is also an ethical problem for all
Americans. To allow race and ethnicity to play any role in providing health
care to our fellows goes against the basic principles of ethics. I will argue
that—according to the ethical principles of respect for persons, beneficence/nonmaleficence,
and justice—action must be taken immediately to address these concerns and counteract
any form of racism in the medical profession, whether explicit or unconscious.
Respect for Persons
This principle incorporates two ethical convictions: First, that persons should
be treated as autonomous agents; and second, that persons with diminished autonomy
are entitled to protection. The principle of respect for persons thus divides
into two separate moral requirements: the requirement to acknowledge autonomy
and the requirement to protect those with diminished autonomy.51 The physician-patient
relationship is a covenant based on mutual trust. It is a fiduciary relationship
based on honesty. Edmund Pellegrino, MD, and David Thomasma, PhD, both of whom
have written extensively in this area, argue that among the obligations that
arise from the physician-patient relationship is technical competence. "The
act of the medical professional is inauthentic and a lie unless it fulfills
the expectation of technical competence," they write.52 Patients, that is, should
be able to expect their physicians to have the technical skills to assess and
manage their medical conditions.
Unfortunately, racial and ethnic minorities believe their medical conditions
are not being assessed and managed by physicians in the same way that
the medical conditions of white patients are being assessed and managed. The
IOM report made it clear that disparities between whites and minorities exist
in a number of disease areas.53 Giselle Corbie-Smith, MD, and her colleagues
found that African Americans were "more likely to believe that their physicians
would not explain research fully or would treat them as part of an experiment
without their consent."54 Medical abuses have come to light through the oral
tradition of minority groups and published reports. Minorities believe that
their physicians cannot be trusted, that physicians sometimes use them as guinea
pigs in experiments, and that minorities are sometimes not offered the same
medical procedures that whites are offered, even though they have the same clinical
symptoms. It appears that the technical competence of some physicians is being
compromised by the impediment of prejudice and bias.
These concerns directly relate to the issue of informed consent. Patients
have the right to be informed about the advantages and disadvantages of any
medical treatment, experimental or otherwise, and about any viable alternatives
as well. Research has shown that, in many cases, racial and ethnic minorities
cannot give informed consent because they have not been informed of all the
options available to manage their illnesses. Violations of informed consent
by medical professionals have been documented and, in some cases, widely publicized.
In fact, past and present injustices against minorities, both factual and
perceived, have sometimes led them to interpret informed consent procedures
as "liability waivers" for researchers, doing nothing for the former and freeing
the latter from the risk of possible lawsuits. One basic aspect of the principle
of respect for persons is that a person should never be treated simply as a
means to an end. When a caregiver fails to give his or her patient all relevant
information concerning risks and benefits, or inform him or her of all possible
treatment options, or purposely withholds treatment that is the "standard of
care," or declines to recruit minorities for medical trials because he or she
believes that poor compliance is common among them—then that caregiver is using
patients as a means rather than an end.
As a result of both explicit and subtle prejudice and bias on the part of
medical professionals, minority patients are suffering needlessly. This prejudice
clearly violates the ethical principle of respect for persons. Minority patients'
autonomy, the basic respect they deserve as human beings, is being violated
because they are allowed to endure pain, suffering, and even death when such
hardships could be alleviated.
The principle of beneficence involves the obligation to prevent, remove, or
minimize harm and risk to others and to promote and enhance their good. Beneficence
includes nonmaleficence, which prohibits the infliction of harm, injury, or
death upon others. In medical ethics this principle has been closely associated
with the maxim primum non nocere ("Above all, do no harm"). Allowing
a person to endure pain and suffering that could be managed and relieved violates
the principle of beneficence, because one is not preventing harm and, therefore,
not acting in the best interest of the patient. The duty to act in the patient's
best interest must take preference over a physician's or researcher's self-interest.
Clinical researchers are aware that their work should involve diverse populations
of patients. "Race, sex, and other socio-demographic factors can influence the
course of disease, the response to treatment, the types of toxic effects, and
health related behavior, and the degree of diversity can therefore affect the
generalizability of the results," write A. L. Gifford and colleagues, the researchers
in a study showing that African Americans and Hispanics were half as likely
as whites to participate in HIV treatment trials and about half as likely to
receive experimental medicines.55 This lack
of participation is caused by, first, minorities' distrust of the medical establishment,
and, second, the tendency of physician-researchers to avoid recruiting minorities
because they believe poor compliance is common in these groups.56
As a result, blacks have, in absolute numbers, outnumbered whites in new AIDS
diagnoses and deaths since 1996; since 1998, they've outnumbered whites in the
number of people living with AIDS.57 Because
of their failure to become involved in clinical trials for new treatments, blacks
and Hispanics have long been disproportionately affected by the AIDS epidemic.
The stereotyping by researchers and physicians of racial and ethnic minorities
(assuming, for example, that they are more likely to abuse drugs, comply poorly
with treatment, and neglect follow-up care) may contribute to higher death rates
and lower survival rates among minorities than among whites suffering from illnesses
of comparable severity.
Physicians have, as moral agents, an ethical responsibility to treat their
patients in a way that will maximize benefits and minimize harm. Failure to
adequately assess and manage medical conditions, for whatever reason, is not
in the best interest of the patient. Statistics show that, for men and women
combined, blacks have a cancer death rate about 35 percent higher than that
for whites and that the death rate for cancer among black men is about 50 percent
higher than it is for white men.58 Minorities suffer disproportionately from
cardiovascular disease. The rate of diabetes for blacks is approximately 70
percent higher than for whites, and the rate in Hispanics is double that of
whites. The prevalence of diabetes among American Indians and Alaska Natives
is nearly three times that for the total population. Finally, compared to white
babies, American Indian and black babies are 1.5 and 2 times, respectively,
more likely to die in their first year of life.
It is clear, after reviewing these statistics and identifying the biases and
stereotyping that exist in the medical profession, that disparities in US health
care expose minority patients to unnecessary risks, including possible injury
and death. Physicians have a moral responsibility to do what is good for their
patients. Should a physician be impeded in the exercise of his or her reason
and free will because of prejudice or bias, then that physician has an ethical
responsibility to either overcome that impediment or transfer the patient to
another physician, one who will do what is demanded by the basic precepts of
medicine—seek the patient's good. Failure to recognize prejudice and bias is
a failure not only of the test of beneficence; it may also be a failure of the
test of nonmaleficence.
This principle recognizes that each person should be treated fairly and equitably,
and be given his or her due. The justice principle can be applied to the problem
under discussion in two ways.
Inequality in Health Care Inequality concerning adequate health care
for Americans is a well-documented fact. For years this inequality was attributed
to socioeconomic causes resulting in a lack of access to care. With the publication
of the IOM report, however, it is apparent that subtle racial and ethnic prejudice
and differences in the quality of health plans are also among the reasons why
even insured members of minorities sometimes receive inferior care. Prejudice
and negative racial and ethnic stereotypes may be misleading physicians, medical
researchers, and other health care professionals. Whether such bias is explicit
or unconscious, it is a violation of the principle of justice. It has been documented
that members of minority groups are not receiving the same standard of care
that whites are receiving, even when they have the same symptoms. This is a
blatant disregard of the principle of justice.
Inequitable Allocation of Resources The principle of justice also pertains
to the fair and equitable allocation of resources. It has been documented that
members of minorities are less likely than whites to be given appropriate cardiac
medicines or undergo coronary bypass surgery. They are less likely to receive
kidney dialysis, kidney transplants, or the best diagnostic tests and treatments
for cancer. They are also less apt to receive the most sophisticated treatments
We Americans espouse the belief that all men and women are equal. If we truly
believe it, we should insist that all men and women must, whatever their race
or ethnicity, receive equal medical treatment and resources. Denying certain
minorities such treatment—when whites receive them as a standard of care—is
an unjust allocation of resources and violates a basic tenet of justice.
Physicians and medical researchers have an ethical obligation to use available
resources fairly and to distribute them equitably. Failure to do so is ethically
irresponsible and morally objectionable. To compromise the basic ethical foundations
upon which medicine stands is destructive not just to minority patients but
to society as a whole.
Toward Significant Reform
Racial and ethnic disparities in health care are now documented. This problem
is not going to disappear. Much has been written about the failure of health
care professionals and medical institutions to address this issue, but simple
rhetoric without significant reform will accomplish nothing. Immediate changes
that will address the issues of racial and ethnic disparities directly and concretely
are needed. To accomplish this task, we must (or, in some cases, follow through
on) the following initiatives.
Research Society should undertake research that allows it to understand
both the causes of racial and ethnic prejudice and the ways that prejudice affects
health care. We already know some of the causes: poverty, lack of access to
high-quality health services, environmental hazards in homes and neighborhoods,
and lack of effective prevention programs tailored to the needs of specific
communities.59 However, we need research that focuses on the unconscious biases
that seem to pervade the medical establishment.
One such initiative began in 1999 when Congress required the Agency for Health
Care Research and Quality to produce a new annual report to be called A National
Health Care Disparities Report. The committee established to write this
report held two open meetings that year, during which it was presented with
a great deal of valuable information, including papers it had commissioned and
testimony from experts. The committee issued its first report in 2002; a volume
called Guidance for the National Health Care Disparities Report as published
this year.* These reports should call attention to the inequality in US health
care services, thereby providing the impetus for new initiatives to correct
these disparities. Further studies like this would be of great benefit.
* Guidance for the National Healthcare Disparities Report
is available from the National Academies Press (www.nap.edu/catalog/10512.html).
Education Also needed is education for both medical professionals and
patients. Medical professionals need to become more aware of the subtle forms
of prejudice that affect their medical decisions. Patients need education that
makes them more active and better informed in their decisions concerning
The education of health care professionals should begin in medical school
and continue throughout their careers. It should focus on the fact that racial
and ethnic disparities do exist and on the ways they can be identified and confronted.
The IOM has recommended cross-cultural education programs that, first, enhance
professionals' awareness of how cultural and social factors influence health
care, and, second, provide methods for obtaining, negotiating, and managing
this information clinically. "Cross-cultural education can be divided into three
conceptual approaches," write the authors of the IOM report.60 These approaches
focus, respectively, "on attitudes (cultural sensitivity/awareness approach);
knowledge (multicultural/categorical approach), and skills (cross-cultural
approach), and [have] been taught using a variety of interactive and experiential
methodologies. Research to date demonstrates that training is effective in improving
provider knowledge of cultural and behavioral aspects of health care and building
effective communication strategies."
Cross-cultural education can be done in medical schools, for interns and residents
during their training, and for attending physicians as continuing medical education
courses. On an individual basis, each physician should follow the recommendation
of the¡American Medical Association: "Physicians should examine their own practices
to ensure that racial prejudice does not affect clinical judgment in medical
care."61 Only through self-examination and continuing objective education will
medical professionals be able to identify and conquer racial and ethnic bias
To educate the public, real and meaningful partnerships must be created between
the medical establishment and communities. Partnerships involving schools, churches,
faith-based organizations, and local civic groups are the key to creating trust
with the minority communities. But such efforts cannot be seen as one-time events;
they must be part of an ongoing process that involves engagement, dialogue,
and feedback.62 Medical professionals must engage target communities through
such mechanisms as advisory boards, free medical screening for various illnesses,
health fairs, and public education lectures. In these engagements, they must
conduct a dialogue that ensures open and honest communication and mutual respect.
Such sessions will, on one hand, allow medical professionals to inform the public
about the need for medical screening and clinical research; and, on the other,
allow the public to voice its concerns about various diseases, research protocols,
new medications, and other matters.
Dialogue of this kind will provide the feedback that gives both medical professionals
and the public the ability to listen to each other's concerns through periodic
evaluations, reviews, and open forums. Only through honest and effective communication
will trust be fostered and patients come to feel that they have some control
in health care decision making. Hopefully, this honest communication will also
help dispel myths circulating in the minority communities concerning diseases,
medications, experiments, and similar issues. Health care professionals must
be seen as advocates for all people. Only then will patients' involvement
in care, adherence to recommended treatment, and willingness to participate
in clinical research increase.63
Adequate Care for All One way to foster trust in the minority communities
is to offer every citizen adequate health care coverage. Marcia Angell, the
former editor of the New England Journal of Medicine, believes that the
United States needs a national "single-payer" system that would eliminate unnecessary
administrative costs, duplication, and profits in health care. She has proposed
extending Medicare to the entire population. "Medicare is, after all, a government-financed
single-payer system embedded within our private, market-based system," she writes.64 "It's
by far the most efficient part of our health-care system, with overhead costs
of less that 3 percent, and it covers virtually everyone over the age of 65."
Offering all Americans adequate health care coverage would be a significant
step in building trust between health care professionals and the minority communities,
who would benefit the most from this initiative. In addition, offering access
to high-quality health services for all Americans would help to eliminate the
disparities that exist today.
Minority Physicians Efforts should also be made to increase the number
of minority doctors. Recent statistics show that "Minorities, including African
Americans, Asian Americans, Hispanics and American Indians, account for just
9% of the nation's doctors."65 Increasing the number of minority doctors would
both increase the trust factor between minorities and the medical establishment
and foster open discussion of communication and cultural issues between patients
Evidence-Based Guidelines The IOM study also suggests that physicians
should rely on "evidence-based guidelines" to determine the care given to patients.
If physicians were to adhere to such guidelines, and if their adherence were
made known to patients, that would help dispel patients' fears that they may
be given inferior care because of their race or ethnic background.
Equity in Organ Donation On November 14, 2002, the board of directors
of the Organ Procurement and Transplantation Network/United Network for Organ
Sharing revised the allocation priority for tissue matching. The change means
that about 250 kidney transplants that would previously have gone to white patients
will now be given to minority patients. The organizations involved hope that,
by ensuring equity among organ transplant recipients, they will boost the public's
confidence in the transplant system.66 Changes like this should encourage trust
within the minority communities and may even increase organ donation from minorities.
Myth and Rumor Meanwhile, leaders in the minority communities have
an ethical responsibility to address the many rumors and myths surrounding HIV/AIDS,
vaccinations, and similar matters that spread in their communities. This is
not to say that what has happened in the past should be ignored or forgotten.
Minority communities cannot close their eyes to what events like the Tuskegee
syphilis study exposed. But civic and church leaders should begin an honest
dialogue with the community about HIV/AIDS, clinical trials, and other health
related issues. It is time for leaders in the minority communities to work with
the medical establishment to improve the health and safety of their constituents.
Racial and ethnic disparities in health care constitute a complex issue that
pertains to individuals, institutions, and society as a whole. Unless we Americans
address these disparities and begin to eradicate them, we will never attain
the goal of providing high-quality health care in the United States. If we do
not make this a priority now, everyone will pay a price in the future.
- Committee on Understanding and Eliminating Racial and Ethnic
Disparities in Health Care, Institute of Medicine, Unequal Treatment: Confronting
Racial and Ethnic Disparities in Health Care, National Academies Press,
Washington, DC, 2002.
- A. L. Gifford, et al., "Participation in Research and Access
to Experimental Treatments by HIV-Infected Patients, New England Journal
of Medicine, vol. 346, no. 18, 2002, pp. 1,373-1,382.
- G. Corbie-Smith, S. Thomas, and D. St. George, "Distrust,
Race, and Research," Archives of Internal Medicine, vol. 162, no. 21,
2002, pp. 2,458-2,463.
- Committee on Understanding, p. 4.
- US Conference of Catholic Bishops, Ethical and Religious
Directives for Catholic Health Care Services, Washington, DC, 2001, pp.
- The Tuskegee study is discussed below. See also James H.
Jones, Bad Blood: The Tuskegee Syphilis Experiment: A Tragedy of Race and
Medicine, Free Press, New York City, 1981.
- Gordon W. Allport and Leo Postman, The Psychology of
Rumor, Henry Holt, New York City, 1947, p. ix.
- Patricia A. Turner, I Heard It through the Grapevine:
Rumor in African-American Culture, University of California Press, Berkeley,
CA, 1993, p. 4.
- Turner, p. 5.
- Allport and Postman make a case that legends are often
little more than solidified rumors (p. 167).
- Turner, pp. xv and 108.
- Turner, p. 138.
- See Vanessa Gamble, "A Legacy of Distrust: African Americans
and Medical Research," American Journal of Preventative Medicine, vol.
9, no. 6, p. 35.
- Gamble. See also T. D. Weld, American Slavery as It
Is: Testimony of a Thousand Witnesses, American Anti-Slavery Society,
New York City, 1839; F. N. Boone, Dr. Thomas Hamilton: Two Views of a Gentleman
of the Old South, Phylon, New York City, 1967; and J. M. Sims, The
Story of My Life, Da Capo, New York City, 1868.
- For analyses of the influence of the Paris school on US
medicine, see Edwin Ackerknecht, Medicine at the Paris Hospital, 1794-1848,
Johns Hopkins University Press, Baltimore, 1967; Richard Shryock, The Development
of Modern Medicine: An Interpretation of the Social and Scientific Factors
Involved, Knopf, New York City, 1947; Michael Foucault, The Birth of
the Clinic: An Archeology of Medical Perception, Pantheon, New York City,
1973; and Gerald Grob, Edward Garvis and the Medical World of Nineteenth-Century
America, University of Tennessee, Knoxville, TN, 1978.
- Todd Savitt, "The Use of Blacks for Medical Experimentation
and Demonstration in the Old South," Journal of Southern History, vol.
48, no. 3, 1972, pp. 332-333.
- Savitt, p. 333.
- Gladys-Marie Fry, Night Riders in Black Folk History,
University of Georgia Press, Athens, GA, 1991, pp. 174-176.
- Fry, p. 176. See also Alan Guttmacher, "Bootlegging Bodies,"
Society of Medical History of Chicago, January 1935, pp. 353-402.
- Fry, p. 171.
- For an analysis of this historical episode, see "The Negro
Migration of 1916-1918, Journal of Negro History, January 1921, pp.
- Fry, p. 171.
- David C. Humphrey, "Dissection and Discrimination: The
Social Origins of Cadavers in America," Bulletin of the New York Academy
of Medicine, vol. 49, 1973, p. 822.
- Humphrey, p. 824.
- Gamble, p. 36.
- Gamble; see also T. W. Murrell, "Syphilis and the American
Negro," JAMA, vol. 54, no. 11, 1910, p. 847; and H. H. Hazen, "Syphilis
in the American Negro," JAMA, vol. 63, no. 13, 1914, p. 463.
- In August 1972, HEW appointed an investigatory panel, which
then issued a report a year later. The panel found the study to have been
"ethically unjustified," arguing that penicillin should have been provided
to the men involved in it. See Allen Brandt, "Racism and Research: The Case
of the Tuskegee Syphilis Study," Hastings Center Report, December 1978,
p. 21; and Ad Hoc Advisory Panel, Department of Health, Education, and Welfare,
"Final Report of the Tuskegee Syphilis Study," Washington, DC, 1973. For a
more detailed analysis of the study, see the following articles from the Hastings
Center Report (vol. 22, no. 6, 1992): Arthur Caplan, "When Evil Intrudes"
(pp. 29-32), Harold Edgar, "Outside the Community" (pp. 32-35), Patricia A.
King, "The Dangers of Difference" (pp. 35-38), and James H. Jones, "The Tuskegee
Legacy: AIDS and the Black Community (pp. 38-40).
- For a discussion of the impact of birth control on the
black community, see R. G. Weisbord, "Birth Control and the Black American:
A Matter of Genocide?" Demography, vol. 10, no. 4, 1973, pp. 571-590.
- Norplant is the trade name for a birth control product
consisting of six thin capsules that, when implanted in a woman's arm, releases
an ovulation-inhibiting hormone. Turner, p. 221.
- Turner, p. 222. See also "One Well-Read Editorial," Newsweek,
December 31, 1990, pp. 65-66; and "Poverty and Norplant," Philadelphia
Inquirer, December 12, 1990, p. A-18.
- See, for example, the following articles from the New
England Journal of Medicine (vol. 335, no. 11, 1996): H. Jack Geiger,
"Race and Health Care—an American Dilemma" (pp. 815-816); and M. E. Gornick,
et al., "Effects of Race and Income on Mortality and Use of Service Among
Medicare Beneficiaries" (pp. 791-799).
- D. Y. Wilkenson, "For Whose Benefit? Politics and Sickle
Cell Anemia, Black Scholar, vol. 5, no. 8, pp. 26-31. See also King,
- Curtis Cost, Vaccines Are Dangerous: A Warning to the
Black Community, A&B Books, Brooklyn, NY, 1991, p. 5.
- Bonnie O'Connor, "Foundations of African-American Mistrust
of the Medical Establishment" (Hahnemann University Medical School, Philadelphia,
n.d.), pp. 10-11.
- A national survey of 500 black people conducted by Roper
Starch Worldwide Inc. found that 18 percent believed AIDS was a virus concocted
by humans; only 9 percent in the general population agreed. Among the blacks
surveyed, 9 percent said they believed that HIV and AIDS were part of a plot
to kill blacks; only 1 percent in the general population agreed. See Lynda
Richardson, "An Old Experiment's Legacy: Distrust of AIDS Treatment," New
York Times, April 21, 1997, p. A-9.
- Gamble, p. 37. See also S. B. Thomas and S. C. Quinn, "The
Tuskegee Syphilis Study, 1932-1972: Implications for HIV Education and AIDS
Risk Education Programs in the Black Community," New York Times, April
21, 1997, p. A-9.
- Turner, p. 158. See also E. A. Kloniff and H. Landrine,
"Do Blacks Believe that HIV/AIDS Is a Government Conspiracy against Them,"
Preventative Medicine, vol. 28, no. 5, 1998, pp. 451-457; G. Corbie-Smith,
et al., "Attitudes and Beliefs of African Americans toward Participation in
Medical Research," Journal of General Internal Medicine, vol. 14, no.
9, 1999, pp. 537-546.
- Gifford and colleagues note that "age, sex, diet, underlying
disease, and the concomitant use of other medications, race and genetic factors
may play pivotal parts in the variability of subjects' responses to a medication."
See also Talmadge King, "Racial Disparities in Clinical Trials," New England
Journal of Medicine, vol. 346, no. 18, pp. 1,400-1,401.
- Gifford, et al.
- Gifford, et al., pp. 1,376-1,379. The National Institutes
of Health (NIH) and the Food and Drug Administration have encouraged the inclusion
of more women and minority groups in clinical trials. See National Institutes
of Health, "Guidelines on the Inclusion of Women and Minorities as Subjects
in Clinical Trials," Federal Register, vol. 59, March 28, 1994, pp.
14,508-14,513; and Food and Drug Administration, "Modernization Act of 1997,"
PL 105-115 (November 21, 1997). It should be noted that NIH experts challenged
the findings of Gifford and his colleagues, arguing that because the study
was based on patient interviews conducted in 1996-1998, its conclusions were
out of date.
- Gifford, et al., p. 1,379.
- Talmadge King, p. 1,402.
- Talmadge King. See also L. Fogarty, et al., "Patient Adherence
to HIV Medication Regimens: A Review of Published and Abstract Results," Patient
Education and Counseling, vol. 46, no. 2, 2002, pp. 93-108.
- Talmadge King, p. 1,401.
- Corbie-Smith, et al., "Distrust, Race, and Research."
- Committee on Understanding, p. 2.
- Committee on Understanding, pp. 3-4.
- Committee on Understanding, pp. 4-5. See also K. A. Schulman,
et al., "The Effect of Race and Sex on Physicians' Recommendations for Cardiac
Catheterization," New England Journal of Medicine, vol. 340, no. 8,
2002, pp. 618-626; J. M. Abreu, "Conscious and Nonconscious African American
Stereotypes: Impact on First Impression and Diagnostic Ratings by Therapists,"
Journal of Consulting and Clinical Psychology, vol. 67, no. 3, 1999,
pp. 387-393; and M. Van Ryn and J. Burke, "The Effect of Patient Race and
Socio-Economic Status on Physicians' Perceptions of Patients," Social Science
and Medicine, vol. 50, no. 6, 2000, pp. 813-828.
- David Satcher, "Our Commitment to Eliminate Racial and
Ethnic Health Disparities," Yale Journal of Health Policy, Law, and Ethics,
vol. 1, no. 1, 2001, pp. 1-14.
- Satcher, p. 1.
- National Commission for the Protection of Human Subjects
of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles
and Guidelines for the Protection of Human Subjects of Research, US Government
Printing Office, Washington, DC, 1979, p. B-1.
- E. D. Pellegrino and D. C. Thomasma, A Philosophical
Basis of Medical Practice, Oxford University Press, New York City, 1981,
- Committee on Understanding, p. 2.
- Corbie-Smith, et al., p. 2,460.
- Gifford, et al., p. 1,373.
- Talmadge King, p, 1,402. See also C. K. Svensson, "Representation
of American Blacks in Clinical Trials of New Drugs," JAMA, vol. 269,
no. 2, 1989, pp. 263-265.
- Centers for Disease Control and Prevention, "United States
HIV/AIDS Statistics," HIV/AIDS Surveillance Report, June 2001, pp.
- Satcher, pp. 1-14.
- Satcher, p. 2.
- Committee on Understanding, pp. 5-6.
- Council on Ethical and Judicial Affairs, Code of Medical
Ethics: Current Opinions with Annotations, American Medical Association,
Chicago, 1998, pp. 9, 121.
- Corbie-Smith, et al., 2,462.
- Marcia Angell, "The Forgotten Domestic Crisis," New
York Times, October 13, 2002, Week section, p. 13.
- Sheryl Gay Stolberg, "Race Gap Seen in Health Care of Equally
Insured Patients," New York Times, March 21, 2002, pp. A-1-A-4.
- The change involves modifying human leukocyte antigen (HLA)
matching that measures the immune system compatibility of an organ donor and
a recipient. Patients who have better HLA matches with potential donors have
historically received a higher priority for transplantation. But medical science
has enhanced graft survival, easing the need to seek perfect matches. See
Mike Mitka, "Change in Kidney Transplantation Priority Will Help Organ Recipients
in the Minority," JAMA, vol. 288, no. 23, 2002, p. 2,953.
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