SLAVERY, SEGREGATION AND RACISM: TRUSTING THE HEALTH CARE SYSTEM AIN'T ALWAYS EASY!
AN AFRICAN AMERICAN PERSPECTIVE ON BIOETHICS
R. Randall , 15 St. Louis U. Pub. L. Rev. 191 -235 (1996).
I am a registered nurse and
a family nurse practitioner. I have a master's degree in nursing. I
practiced nursing for 15 years in Alaska and Washington. I write and work
in the area of health care law. I understand the health care system and
the legal system . . . I am African American and trust the health care
system to work in ways that ultimately will harm my people.
Many people are surprised at the level of distrust of the health care system
held by African Americans. However, fear and distrust of the health care system
is a natural and logical response to the history of experimentation
and abuse. The fear and distrust shape our lives and, consequently, our
perspectives.(2) that perspective keeps African Americans
from getting health care treatment, from participating in medical research,
from signing living wills, and from donating organs. That perspective affects
the health care that African Americans receive. This fear and distrust
is rarely acknowledged in traditional bioethical discourse.
Some bioethicists question the existence of a "uniquely" African American
bioethical perspective. (3) They maintain that since
the values and beliefs held by African Americans are also held by other
oppressed groups, such as Native Americans, there is no African American
perspective. However, these traditional bioethicists miss (or ignore) an
important point: perspective is merely a subjective evaluation of the relative
significance of something--a point-of-view. (4) Thus,
to acknowledge an African American perspective, it is not necessary that
African American values and belief systems be entirely different from others.
It is faulty to assume that any group shares exactly the same value
system with other groups. For example, Americans do not have one ethical
perspective. Rather, race, class, and gender modify the commonality of
the American experience. Different groups have had different experiences
that, at a minimum, modify the dominant American perspective, if not replace
it with an entirely different value structure. For African Americans, the
combination of slavery, segregation, and racism have given us a different
set of "intervening background assumptions about such essential bioethical
concepts as personhood, bodily integrity, the moral community, fulfilling
lives and utility." (5)
As a subculture of the American society, we have experienced something
that others have not. The unique combination of slavery, segregation, and
racism have caused us to develop not only different behavioral patterns,
values, and beliefs but also different definitions, standards, or ordering
of values. Furthermore, even where there is little difference in value
systems and perspectives, there is a difference in the normative application
of bioethical principles. For instance, there is no question that the principles
of autonomy, beneficence, nonmaleficence, and justice have not been applied
to African Americans in the same manner as European Americans.
In the "Poplar Tree Narrative" Dr. Dick, a conscientious physician,
applies the prima facie principles of beneficence, autonomy, and justice
in such a way that castration of his black male patient is construed as
a morally justifiable act, in substance and as a procedure . . . . [It
kept the male] from getting into "trouble" . . . . [It made the male] .
. . a better slave. . . . [He protected the male patient's autonomy] by
getting what he construes to be [the patient's] informed consent. (6)
The apparent principles of Eurocentric bioethics are "embedded in a
cultural matrix that encodes them with meaning." (7)
The reality of bioethics is that ideas, such as autonomy, choice, beneficence,
justice, and informed consent, are grounded in perspective and cultural
context. (8) Perspectives are based, in part, on class,
race, and gender experiences. The experiences of poor people are different
from those of rich people; those of African Americans are different from
European Americans, Native Americans, Hispanic Americans or Asian Americans.
Experiences differ for women and men. Furthermore, rich people, White people,
and men have more power than poor people, African Americans, or women.
Power also affects experiences. A group's perspective reflects both cultural
context and power or status differentials. (9)
But what then forms the basis of the African American perspective? (10)
Certainly, African American culture has acquired a significant part of
its roots from the continent of Africa. For us, that means a belief system
that includes a humanistic orientation, (11)
a focus on both personal and social responsibilities, (12)
and a high value placed on community belonging. (13)
To the extent that bioethical discourse and practice do not incorporate
these values, they do not reflect the values of the African American community.
However, African Americans' distrust of the health care system is based
on more than a lack of certain African-based values. Our distrust is the
direct result of our unique cultural birth in America. The African American
culture is uniquely American. In some ways, African Americans, like Indians
and Eskimos, are native Americans; that is, as a culture, African Americans
exist only in America. African Americans are a blend of all the races of
the world. (15) The dominant racial basis for our
group is a blend of features from many African tribes. The most prominent
influence on African American culture has been its past (and present) experiences
of slavery, segregation, and racism. These African American experiences
are clear evidence of cultural context, power, and status differentials
which have resulted in a distrust of the health care system. This historical
distrust is reinforced through current, continued, and ever-present institutional
racism. (16) These experiences fuel the basis
for African American distrust. (17)
FN1. My distrust of the health care system is typical
of a belief held in the African American community: "I believe that the
AIDS virus was developed in government labs for the purpose of controlling
black folks." Annette Dula, African American Suspicion of the Healthcare
System Is Justified: What Do We Do About It?, 3 CAMBRIDGE Q. HEALTHCARE
ETHICS 347, 347 (1994) (citations omitted). "[M]any black Americans believe
that AIDS and the health measures used against it are part of a conspiracy
to wipe out the black race." The AIDS 'Plot' Against Blacks, N.Y. TIMES,
May 12, 1992, at A22. "There's still so much fear and trepidation about
what happened in Tuskegee, and it fuels the distrust blacks have of public
health." Cheryl Clark, The Ghost of Tuskegee, S.D. UNION & TRIB., Jan.
28, 1996, at D14. "Behind the facade of big hospitals, many African Americans
can only see one big medical experiment." Carol Stevens, Research: Distrust
Runs Deep; Medical Community Seeks Solutions, DET. NEWS, Dec. 10, 1995,
at A12 (quoting Vernice Anthony, Senior Vice-President of the St. John
Health System, who has seen the "paranoia").
FN2. See generally Barbara A. Koenig & Jan Gates-Williams,
Understanding Cultural Difference in Caring for Dying Patients, 163 W.J.
MED. 244 (1995) (asserting that experiences of illness and death, as well
as beliefs about the appropriate role of healers, are profoundly influenced
by cultural background); Clark, supra note 1, at D14; Cynthia Hubert, African
Americans Breaking Silence on Reality of AIDS, SACRAMENTO BEE, Jan. 2,
1996, at A1 (reporting that the inherent distrust among African Americans
of the public health system results in people not accessing the system);
Carol Stevens, Churches Preach the Gospel of Good Health, DET. NEWS, Dec.
11, 1995, at A1 (reporting that the lingering distrust of medical institutions
has made it difficult for doctors to convince African Americans of the
importance of screening tests); Stevens, supra note 1, at A12 (reporting
concerns of African Americans about participating in medical research and
screening tests); Sharon Voas, Aging Blacks Sick, Scared Past Abuses, Tradition
Keep Them From Clinic, PITT. POST-GAZETTE, Aug. 27, 1995, at B1 (reporting
failure of aging African Americans to seek care because of fear of doctors,
of the haunting memories of shoddy hospitals for "coloreds" they were relegated
to as children, and of being used in medical experiments).
FN3. Tom L. Beauchamp, Response to Jorge Garcia,
in AFRICAN-AMERICAN PERSPECTIVES ON BIOMEDICAL ETHICS 67, 72 (Harley E.
Flack & Edmund D. Pellegrino eds., 1992) (maintaining that there is
nothing particularly ethnic about the African American perspectives, since
Native Americans may be as disposed to them as African Americans).
FN4. WEBSTER'S II NEW COLLEGE DICTIONARY 821 (1985).
FN5. Leonard Harris, Autonomy Under Duress, in AFRICAN-AMERICAN PERSPECTIVES
ON BIOMEDICAL ETHICS 133, 134-35 (Harley E. Flack & Edmund D. Pellegrino
eds., 1992) (discussing autonomy and health care as they relate to African
Americans). See generally CECIL HELMAN, CULTURE, HEALTH AND ILLNESS (1995)
(defining medical anthropology and discussing its impact on health and
disease issues); CHARLES TAYLOR, MULTICULTURALISM AND "THE POLITICS OF
RECOGNITION" (1992); Marjorie Kagawa-Singer, Diverse Cultural Beliefs and
Practices About Death and Dying in the Elderly, in CULTURAL DIVERSITY AND
GERIATRIC CARE: CHALLENGES TO THE HEALTH PROFESSIONS (Darryl Wieland et
al. eds., 1994) (recognizing that differences exist in the way cultures
experience and express death and dying); Celia J. Orona et al., Cultural
Aspects Of Nondisclosure, 3 CAMBRIDGE Q. HEALTHCARE ETHICS 338 (1994);
P.V. Caralis et al., The Influence Of Ethnicity And Race on Attitudes Toward
Advance Directives, Life-Prolonging Treatments, and Euthanasia, 4 J. CLIN.
ETHICS 155 (1993); Nancy Adler et al., Socioeconomic Inequalities In Health:
No Easy Solution, 269 JAMA 3140 (1993) (considering mechanisms through
which socioeconomic status affects health); Judith Barker, Cultural Diversity--
Changing The Context Of Medical Practice, 157 W.J. MED. 248 (1992) (reporting
on the need for more clinical information to assist in the medical care
of indigenous, as well as immigrant groups in America); Margaret Lock,
The Concept Of Race: An Ideological Construct, 30 TRANSCULTURAL PSYCHIATRIC
RES. REV. 203 (1993) (arguing that the health and well-being of visible
minorities will continue to suffer as long as decisions are based on race
and ethnicity); Arthur Kleinman & Joan Kleinman, Suffering And Its
Professional Transformation: Toward an Ethnography of Interpersonal Experience,
15 CULTURAL MED. & PSYCHIATRIC 275 (1991) (discussing the plight of
Chinese society and its cultural experiences); Ladson Hinton IV & Arthur
Kleinman, Cultural Issues and International Psychiatric Diagnosis, in INTERNATIONAL
REVIEW OF PSYCHIATRY 111 (Jorge Alberto Costa e Silva & Carol Nadelson
eds., 1993) (analyzing the differences between relativists and universalists
and their views of a single psychiatric nosology); ARTHUR KLEINMAN, PATIENTS
AND HEALERS IN THE CONTEXT OF CULTURE (1980) (examining methods of healing
throughout various cultures).
FN6. Edmund D. Pellegrino, Response to Leonard, Harris, in AFRICAN-AMERICAN
PERSPECTIVES ON BIOMEDICAL ETHICS 150, 151 (Harley E. Flack & Edmund
D. Pellegrino eds., 1992); Harris, supra note 5, at 133-48 (telling stories,
including the 'Polar Tree Narrative,' involving the application of biomedical
principles in a way that disadvantaged African Americans).
FN7. Pellegrino, supra note 6, at 151.
FN8. Harris, supra note 5, at 133-35.
FN9. Annette Dula, Yes, There Are African-American Perspectives on Bioethics,
in AFRICAN-AMERICAN PERSPECTIVES ON BIOMEDICAL ETHICS 193, 194 (Harley
E. Flack & Edmund D. Pellegrino eds., 1992).
FN10. Marian Gray Secundy, Response to Kwasi Wiredu, in AFRICAN-AMERICAN
PERSPECTIVES ON BIOMEDICAL ETHICS 99, 101 (Harley E. Flack & Edmund
D. Pellegrino eds., 1992) (citing MECHAL SOBEL, TRABELIN' ON: THE SLAVE
JOURNEY TO AN AFRO-BAPTIST FAITH 219 (1988)) (explaining that many West
African world views used consensus to coalesce into African American culture).
FN11. Humanistic belief is one that focuses on the importance of the
human being over all else. "[W]hat is good in general is what promotes
human interests." Kwasi Wiredu, The Moral Foundations of African Culture,
in AFRICAN- AMERICAN PERSPECTIVES ON BIOMEDICAL ETHICS 80, 81 (Harley E.
Flack & Edmund D. Pellegrino eds., 1992); see also Secundy, supra note
10, at 103.
FN12. With a clear sense of individual responsibility comes an equally
strong sense of the social reverberations of an individual's conduct. Thus,
"[t]he primary responsibility for an action, positive or negative, rests
with the doer, but a nontrivial, secondary responsibility extends to the
individual's family and . . . to the . . . community." Wiredu, supra note
11, at 83-84.
FN13. High value related to community belonging is based on a strong
belief that all human beings deserve or ought to be helped. "Human beings
. . . at all times, in one way or another, directly or indirectly, need
the help of their [community]." Id. at 89; see also Secundy, supra note
10, at 103.
FN14. Secundy, supra note 10, at 102; see also Cheryl J. Sanders, Problems
and Limitations of an African-American Perspective in Biomedical Ethics:
A Theological View, in AFRICAN-AMERICAN PERSPECTIVES ON BIOMEDICAL ETHICS
165, 167-70 (Harley E. Flack & Edmund D. Pellegrino eds., 1992).
FN15. Most African Americans have parents, grandparents, or other ancestors
who are not only of African descent, but also of European American, Asian
American, Hispanic American, and Native American descent. My own family
history is typical. On my maternal side, my grandmother's parents were
Cherokee and African. My grandfather's parents were Italian and African.
On my paternal side, my ancestors were all African.
FN16. Dula, supra note 1, at 347-57.