|
V.
. IMPLICATION OF AN AFRICAN AMERICAN BIOETHICAL PERSPECTIVE
SLAVERY, SEGREGATION AND RACISM: TRUSTING THE HEALTH CARE SYSTEM AIN'T ALWAYS EASY!
AN AFRICAN AMERICAN PERSPECTIVE ON BIOETHICS
Vernellia
R. Randall , 15 St. Louis U. Pub. L. Rev. 191 -235 (1996).
Bioethics "addresses the ethical problems posed by modern medicine and
biotechnology." (225) Bioethics is not a single,
distinct academic discipline, but is comprised of practitioners from medicine,
philosophy, theology, law, nursing, medical history, medical anthropology,
medical sociology, and related fields. (226) While
bioethics lacks a single, accepted methodology, (227)
it has traditionally focused on "mid-level ethical principles," such as
autonomy, beneficence, justice, and nonmaleficence. (228)
These principles are intended to be a regulative guideline, stating
conditions of the "permissibility, obligatoriness, rightness, or aspirational
quality of actions falling within the scope of the principle[s]."
(229)
However, there have been a number of challenges to the content of the principles.
(230)
Eurocentric bioethics focuses on the individual, ignoring the interests
of others who are intimately affected, such as the family and the community.
(231)
This focus on the individual is based on a philosophy that regards the
self, and only the self, as the end per se.
(232)
However, the African American perspective views this reliance on ethical
egoism to be misplaced. (233) African Americans believe
that "it takes a whole village" to raise a child, and thus, at a minimum,
African Americans view ethical egoism to be contradictory to the raising
of healthy children. (234) Furthermore, even as adults,
none of us function as islands; we all must rely on others for, at a minimum,
reaffirmation of our self-assessment.
(235)
Second, Eurocentric bioethics embraces Kantian ethics, which are antithetical
to Afrocentric bioethics. Kantian ethics require universal norms and an
impartial perspective, which is inattentive to relationships and community.
(236)
Kantianism privileges abstract reasoning over virtue, character, and moral
emotions. (237) Kantian ethics maintain that the
only way we can morally constitute ourselves is by free and rational choice.
(238) It is the exclusivity of that claim that is
troubling. African Americans believe that we morally constitute ourselves
not only through free and rational choice but also through our parents
and our community. (239)
Third, Eurocentric bioethics tends to view the patient or research subject
generically, without attention to race, gender, or insurance status. (240)
As a result, the development of laws and bioethical principles, discourse,
and practices are informed by the values and beliefs of one group: White,
middle-class, males. (241)
Eurocentric bioethical principles such as autonomy, beneficence, and
informed consent do not have the same force when viewed through the African
American bioethical perspective of distrust. These principles leave considerable
room for individual judgment by health care practitioners. (242)
The flaw of a principle-based paradigm is that very judgment. The application
of the principles will be subject to other values held by the society.
In a racist society (such as ours), the judgment is often exercised in
a racist manner.
Thus, Eurocentric bioethics has adopted rules and has applied them with
little, if any, concern for how race or other characteristics affect the
working of the rules. (243) In fact, numerous studies
have documented a disparity between traditional bioethical practice and
the needs of minority populations. For instance, African Americans notably
differ from European Americans, both in their unwillingness to complete
advance directives and in the desires expressed regarding life-sustaining
treatment. (244) Substantially more African Americans
and Hispanics "wanted their doctors to keep them alive regardless of how
ill they were, while more . . . whites agreed to stop life-prolonging treatment
under some circumstances. . . ." (245)
Eurocentric bioethics fail African Americans because bioethicists "believe,
first, that people behave in ways that can so far be predicted a priori
that empirical evidence about their behavior is superfluous and, second,
that people think and act rationalistically, seeking always to maximize
and exercise autonomy." (246)
Furthermore, when dealing with bioethical concepts, courts have shown
little interest in dealing thoroughly with empirical evidence, or the effects
of judicial doctrines. (247) However, the reality
is very different. (248) People act in ways that
are more consistent with the values they hold, rather than following any
particular bioethical principles. (249) And racism
is a strongly held value in our society.
African Americans have been experimented on without consent, thus violating
the principle of autonomy. (250) We have been treated
and experimented on in ways which have caused us harm, thus violating the
principles of nonmaleficence (251) and beneficence.
(252)
We have been given different treatment and provided different access to
health care, thus violating the principle of justice. (253)
At best, the judgment in applying the articulated principles has been exercised
fairly consistently in a manner which disadvantages and harms African Americans.
The implication for the African American community is the failure of
bioethical problem-solving to take into consideration those factors important
to solving problems in the African American community. Most of the problem-
solving has been at odds with the affirmation of the African American individual
and the African American community. In fact, for the most part, mainstream
bioethicists have consistently neglected to comment on the social ills
or injustices such as "the [African Americans'] enslavement, the injustices
and discrimination they have suffered, the stereotyping of their language
and culture, and their disadvantaged economic, political, educational,
and health status." (254) As a result of this lack
of affirmation, or, this oppression, we are in danger of losing our own
perspectives--our own gifts. (255)
The continued destruction of the African American community results
from the lack of consideration given to our perspectives. The African American
community has a history--and a present context--that is characterized by
medical mistreatment and health care exploitation. European Americans have
a history that is racist and "conspicuously indifferent to community, religion,
virtue, and personal experience." (256) African Americans
face the health care system with anxiety, fear, and disaffection.
(257)
Such anxiety, fear, and distrust will not be alleviated until bioethics
constructs a practical, ethical approach to the anxiety and fear which
would lead to community empowerment. (258) Such a
practical approach would require behaviors such as: reinstatement of community
hospitals; (259) assuring urban perinatal health
care; (260) encouraging traditional lay-midwifery;
(261)
and reestablishing the extended family. (262)
However, such practical approach must be based on not only on the traditional
Eurocentric principles but also on:
recognizing the needs of the community and
not just the individual self;
.formulating bioethical and legal solutions involving
both the family and the community;
.aggressively training health care providers and
institutions about the African American perspective, thus making the barrier
of distrust easier to overcome;
.eliminating the disparities in health status;
.aggressively reducing the existing disparities in
health care delivery in the African American community.
One problem that some bioethicists may have with acknowledging an African
American perspective is the failure of all African Americans to concur
in a description of an ethical belief system. However, such a requirement
is not necessary or even possible. Not all individuals of any group will
believe or act alike. No one expects that all European Americans accept
the dominant view in their culture. Nevertheless, a view may be an accurate
description of some significant aspect of European American culture. However,
my experience shows that attempts to assert, define, and explain the impact
of bioethical or legal behavior on African American culture is met with
resistance. European Americans often base the resistance on an assertion
that such perceptions about African American culture are not representative.
I often wonder if this resistance is based on some attempt--unconscious
or conscious--to avoid having to truly structure a multi-cultural society
and keep the Eurocentric view dominant. (263) Until
bioethicists begin to explicitly address these concerns, African Americans
are not likely to begin to place their trust in the American health system.
Ultimately, bioethicists must recognize the existence of a "spirit, a set
of social structures and norms in African American life that are worthy
of acquisition by Blacks and Whites." (264) |
| FN225. Alexander Morgan Capron & Vicki Michel, Law and Bioethics,
27 LOY. L.A. L. REV. 25, 25 (1993) (citation omitted); John D. Arras, Nancy
Rhoden: Exploring the Dark Side of Biomedical Technology, 68 N.C. L. REV.
835, 835 (1990); Sandra H. Johnson, The Changing Nature of the Bioethics
Movement, 53 MD. L. REV. 1051, 1051-52 (1994).
FN226. Capron & Michel, supra note 225, at 25.
FN227. Id. at 25, 27.
FN228. Id. at 28. "These-four principles are often referred to as the
'Georgetown Mantra' because they have been repeatedly articulated by scholars
from the Kennedy Institute at Georgetown University." Id. at 28 n.10. See
generally TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL
ETHICS (3d ed. 1989) (describing ethical principles that serve as the basis
of analysis in the field of bioethics); THE NATIONAL COMMISSION FOR THE
PROTECTION OF HUMAN SUBJECTS OF BIOMEDICAL AND BEHAVIORAL RESEARCH, THE
BELMONT REPORT: ETHICAL GUIDELINES FOR THE PROTECTION OF HUMAN SUBJECTS
OF RESEARCH (1978) (discussing and identifying basic ethical principles
that should underlie the conduct of research involving human subjects);
Susan M. Wolf, Shifting Paradigms in Bioethics and Health Law: The Rise
of a New Pragmatism, 20 AM J.L. & MED 395 (1994) (analyzing the paradigm
shifts under way in bioethics and health law, concentrating on what is
gained by the shifts and the future of the disciplines). But see ALBERT
R. JONSEN & STEPHEN TOULMIN, THE ABUSE OF CASUISTRY: A HISTORY OF MORAL
REASONING (1988) (asserting that agreement on the solution to bioethical
problems comes not by deductive reasoning from general rules or principles,
but from the analysis and classification of "case" and "circumstances");
H. TRISTRAM ENGELHARDT, JR., BIOETHICS AND SECULAR HUMANISM: THE SEARCH
FOR A COMMON MORALITY xi (1991) (asserting that we should establish a procedural
ethic, based on respect of the freedom of the moral agents involved, even
without establishing the correctness of any particular moral sense); but
see also "IT JUST AIN'T FAIR": THE ETHICS OF HEALTH CARE FOR AFRICAN AMERICANS
(Annette Dula & Sara Goering eds., 1994); AFRICAN-AMERICAN PERSPECTIVES
ON BIOMEDICAL ETHICS (Harley E. Flack & Edmund D. Pellegrino eds.,
1992); FEMINIST PERSPECTIVES IN MEDICAL ETHICS (Helen Bequaert Holmes &
Laura M. Purdy eds., 1992) (discussing the role of ethics in the healing
of medicine); SUSAN SHERWIN, NO LONGER PATIENT: FEMINIST ETHICS AND HEALTH
CARE (1992) (arguing that the "norms" of psychology are male-based and,
as such, females are automatically seen as deviant); John D. Arras, Getting
Down to Cases: The Revival of Casuistry in Bioethics, 16 J. MED. &
PHIL. 29 (1991) (asserting that ethical theory can still play a significant
role in casuistical analysis); Albert R. Jonsen, Of Balloons and Bicycles--or--The
Relationship between Ethical Theory and Practical Judgment, HASTINGS CENTER
REP., Sep.-Oct. 1991, at 14; Henry S. Richardson, Specifying Norms as a
Way to Resolve Concrete Ethical Problems, 19 PHIL. & PUB. AFF. 279
(1990).
FN229. Tom L. Beauchamp, Principles and Other Emerging Paradigms in
Bioethics, 69 IND. L.J. 955, 956 (1994).
FN230. See, e.g., Rebecca J. Cook, Feminism and the Four Principles,
in PRINCIPLES OF HEALTH CARE ETHICS 193 (Raanan Gillon & Ann Lloyd
eds., 1993) (discussing the different theories and distinctions within
the feminist philosophy). But see Ruth Macklin, Women's Health: An Ethical
Perspective, 21 J.L. MED. & ETHICS 23 (1993) (defending the adequacy
of the four principles for gender analysis).
FN231. Fred H. Cate, Emerging Paradigms in Bioethics: Posthumous Autonomy
Revisited, 69 IND. L.J. 1067, 1072 (1994); Wolf, supra note 228, at 402.
FN232. Laurence Thomas, The Morally Beautiful, in AFRICAN-AMERICAN PERSPECTIVES
ON BIOMEDICAL ETHICS 118, 123-25 (Harley E. Flack & Edmund D. Pellegrino
eds., 1992).
FN233. Id.
FN234. Id.
FN235. Id.
FN236. Wolf, supra note 228, at 402.
FN237. Id.
FN238. Thomas, supra note 232, at 123-25.
FN239. Id.
FN240. Wolf, supra note 228, at 402.
FN241. Id. at 408; see also Susan M. Wolf, Health Care Reform and the
Future of Physician Ethics, HASTINGS CENTER REP., Mar.-Apr. 1994, at 28;
Renee C. Fox, The Evolution of American Bioethics: A Sociological Perspective,
in SOCIAL SCIENCE PERSPECTIVES ON MEDICAL ETHICS 201 (George Weisz ed.,
1990) (commenting on the similarities among the shifts in bioethics and
those among the larger American scene); cf. generally Joseph A. Carrese
& Lorna A. Rhodes, Western Bioethics on the Navajo Reservation: Benefit
or Harm?, 274 JAMA 826 (1995) (explaining that Western bioethics, which
emphasizes patient autonomy and self-determination, is generally considered
negative and dangerous by Navajos: the Navajo way of thinking embraces
positive thinking, beauty, harmony, and goodness); see also PRESIDENT'S
COMMISSION FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICINE AND BIOMEDICAL
AND BEHAVIORAL RESEARCH, THE ETHICAL AND LEGAL IMPLICATIONS OF INFORMED
CONSENT IN THE PATIENT-PRACTITIONER RELATIONSHIP 74-76 (1982).
FN242. Beauchamp, supra note 229, at 956-57.
FN243. See generally Wolf, supra note 228, at 396-415 (asserting that
the development of a rule-based approach has come to be known as "principlism,"
or, deductive reasoning from a limited set of middle-level ethical principles,
albeit with some reciprocal attention to the implications of the case at
hand for those principles).
FN244. See Joanne Mills Garrett et al., Life-sustaining Treatments During
Terminal Illness: Who Wants What?, 8 J. GEN. INTERNAL MED. 361, 364 (1993)
(discussing the relationships between patients' choices when they are terminally
ill and their educational, demographic and cultural backgrounds).
FN245. Caralis, supra note 5, at 168.
FN246. Carl E. Schneider, Bioethics with a Human Face, 69 IND. L.J.
1075, 1076 (1994); cf. Leon R. Kass, Practicing Ethics: Where's the Action?,
HASTINGS CENTER REP., Jan.-Feb. 1990, at 5 (discussing issues and problems
that inherently have no answers); American Medical Association Judicial
Council, Ethical Guidelines for Organ Transplantation, 205 JAMA 341, 341
(1968) (maintaining that the "decision whether to permit or to perform
a transplantation procedure . . . must be a reasoned, intellectual decision,
not an emotional decision."); Arthur L. Caplan, Informed consent and Provider/Patient
Relationships in Rehabilitation Medicine, in IF I WERE A RICH MAN COULD
I BUY A PANCREAS? 240, 245 (1992) (asserting that "[c]onsent must be voluntary
and free--the product of deliberative reflection on all possible courses
of action."); Ezekiel J. Emanuel, M.D. & Linda L. Emanuel, M.D., Four
Models of the Physician-Patient Relationship, 267 JAMA 2221, 2225 (1992)
(suggesting that "[a]utonomy requires that individuals critically assess
their own values and preferences; determine whether they are desirable;
affirm, upon reflection, these values as ones that should justify their
actions; and then be free to initiate action to realize the values.")
FN247. See Schneider, supra note 246, at 1078-80; Peter H. Schuck, Rethinking
Informed Consent, 103 YALE L.J. 899, 957-58 (1994) (noting that judicial
cases evince little systematic interest in the consequences of the doctrine
of informed consent; rather, courts tend to invoke the values of autonomy
and improved decision-making and then analyze the implications of those
values).
FN248. PAUL S. APPELBAUM, M.D. ET AL., INFORMED CONSENT: LEGAL THEORY
AND CLINICAL PRACTICE 46 (1987) (asserting that the law of informed consent
rarely results in significant verdicts for plaintiffs since "few patients
sue physicians in general, even fewer sue claiming lack of informed consent,
and yet fewer prevail on that theory. . . ."); PAUL C. WEILER, MEDICAL
MALPRACTICE ON TRIAL 13 (1991) (asserting that doctors are rarely sued:
"[F]or every 8 potentially valid claims, only 1 claim [is] actually filed");
BARRY R. FURROW ET AL., HEALTH LAW: CASES, MATERIALS AND PROBLEMS 187 (2d
ed. 1991) (asserting that the existence of Good Samaritan legislation made
no difference to the willingness of physicians to stop and assist); Arthur
L. Caplan, Can Autonomy Be Saved?, in IF I WERE A RICH MAN COULD I BUY
A PANCREAS? 256, 261 (1992) (asserting that "[n]o more than 10 percent
of the population has either a living will or a durable power of attorney"
and "[s]imilarly dismal statistics are reported for the practices surrounding
the issuance of DNR (do- not-resuscitate), DNI (do-not-intubate), and DNT
(do-not-treat) orders in hospitals and nursing homes. . . ."); Russell
S. Kamer, M.D. et al., Effect of New York State's Do-Not-Resuscitate Legislation
on In-Hospital Cardiopulmonary Resuscitation Practice, 88 AM. J. MED. 108,
109-10 (1990) (asserting that the enactment of DNR legislation in the State
of New York had little effect on the frequency of CPR and on the degree
of patient or family involvement in the DNR decision).
FN249. See ROBERT C. ELLICKSON, ORDER WITHOUT LAW: HOW NEIGHBORS SETTLE
DISPUTES 40-64 (1991) (noting that farmers and ranchers tended to settle
disputes not based on the economically efficient solution, but on the value
of neighborliness and reciprocity); Stewart Macaulay, Non-Contractual Relations
in Business: A Preliminary Study, 28 AM. SOC. REV. 55 (1963) (asserting
that suppliers and purchasers in using contracts and the law of contracts
did not conceive of themselves as using contract law even when, in legal
terms, they were); cf. generally Carl E. Schneider, Lawyers and Children:
Wisdom and Legitimacy in Family Policy, 84 MICH. L. REV. 919, 940 (1986)
(discussing whether "test case litigation" is the sensible way to foster
the welfare of American children); Carl E. Schneider, Rethinking Alimony:
Marital Decisions and Moral Discourse, 1991 B.Y.U. L. REV. 197, 203-09
(discussing alimony and its purpose in today's world of no-fault divorce);
Carl E. Schneider, Social Structure and Social Control: On The Moral Order
of a Suburb, 24 LAW & SOC. REV. 875 (1990) (discussing the manner in
which conflicts are resolved or are ignored in suburbs).
FN250. Autonomy is a principle of respect for the decision-making capacities
of autonomous persons. Cruzan v. Director, Missouri Dep't of Health, 497
U.S. 261, 278 (1990) (holding that the right of autonomy extends to refusing
life- prolonging procedures and to directing their withdrawal); Schloendorff
v. Society of New York Hosp., 105 N.E. 92, 93 (N.Y. 1914) ("Every human
being of adult years and sound mind has a right to determine what shall
be done with his own body; and a surgeon who performs an operation without
his patient's consent commits an assault, for which he is liable in damages."),
overruled by Bing v. Thunig, 2 N.Y.2d 656 (N.Y. 1957); Beauchamp, supra
note 229, at 956; George J. Annas, Life, Liberty and Death, 12 HEALTH MGMT.
Q. 5, 5 (1990) (characterizing autonomy as "[t]he core legal and ethical
principle that underlies all human interactions in medicine. . . ."); John
A. Robertson, Posthumous Reproduction, 69 IND. L.J. 1027, 1028 (1994) (maintaining
that the right of autonomy extends to a principle for determining reproductive
rights after an individual's death).
FN251. Nonmaleficence is a principle of avoiding the causation of harm
to others. Beauchamp, supra note 229, at 956.
FN252. Beneficence represents a group of principles for providing benefits
and balancing benefits against risks and costs. Id.
FN253. Justice is a group of principles for fairly distributing benefits,
risks, and costs. Id.
FN254. Edmund D. Pellegrino, Foreword to AFRICAN-AMERICAN PERSPECTIVES
ON BIOMEDICAL ETHICS at v, vi (Harley E. Flack & Edmund D. Pellegrino
eds., 1992); Wolf, supra note 228, at 397 (asserting that the bioethical
pattern has been the downward application of principles with insufficient
attention to the clinical context, the specific characteristics of the
disputants (such as insurance status, race or ethnicity, and gender), and
whether the rules will actually work in medical settings); see, e.g., Rand
E. Rosenblatt, Dual Track Health Care--The Decline of the Medicaid Cure,
44 U. CIN. L. REV. 643 (1975) (discussing the paradoxical reality that
since doctors must survive from the income of their patients, the benefits
of medicine will remain in the hands of the wealthy); SYLVIA A. LAW, AMERICAN
CIVIL LIBERTIES UNION, THE RIGHTS OF THE POOR 80-110 (1973). See generally
Annette Dula, Bioethics: The Need for a Dialogue with African Americans,
in "IT JUST AIN'T FAIR": THE ETHICS OF HEALTH CARE FOR AFRICAN AMERICANS
11-23 (Annette Dula & Sara Goering eds., 1994) (discussing and criticizing
the lack of critical discussion of cultural and social issues influencing
bioethics.
FN255. Thomas, supra note 232, at 125.
FN256. Sanders, supra note 14, at 166; Dula, supra note 9, at 194.
FN257. See Dula, supra note 1.
FN258. See generally "IT JUST AIN'T FAIR": THE ETHICS OF HEALTH CARE
FOR AFRICAN AMERICANS, supra note 228.
FN259. See generally Alma Roberts, The Evolution of a Community Hospital:
Improving Access to Ensure Political and Financial Viability, in "IT JUST
AIN'T FAIR": THE ETHICS OF HEALTH CARE FOR AFRICAN AMERICANS 195-200 (Annette
Dula & Sara Goering eds., 1994) (highlighting the disparity between
institutional resources spent on training physicians and those spent on
the at-risk citizens the hospital has pledged to serve).
FN260. See generally Brian Hertz, Toward Successful Urban Perinatal
Health Care, in "IT JUST AIN'T FAIR": THE ETHICS OF HEALTH CARE FOR AFRICAN
AMERICANS 201-07 (Annette Dula & Sara Goering eds., 1994).
FN261. See generally Evelyn C. White & Shafia Mawushi Monroe, Interview:
Lay Midwifery and the Traditional Child-Bearing Group, in "IT JUST AINT'
FAIR": THE ETHICS OF HEALTH CARE FOR AFRICAN AMERICANS 208-20 (Annette
Dula & Sara Goering eds., 1994) (discussing a woman's experience about
why and how she became a midwife).
FN262. See generally Margo Okazawa-Rey, Grandparents Who Care: An Empowerment
Model of Health Care, in "IT JUST AIN'T FAIR": THE ETHICS OF HEALTH CARE
FOR AFRICAN AMERICANS 221-23 (Annette Dula & Sara Goering eds., 1994)
(discussing the role of grandparents who are assuming the primary responsibility
of caring for their grandchildren).
FN263. Dula, supra note 254, at 11-23.
FN264. Sanders, supra note 14, at 171 (citing Preston N. Williams, Ethics
and Ethos in the Black Experience, 31 CHRISTIANITY & CRISIS 104 (1971)). |
