Racial disparity in ethical decision making must be addressed
Tuskegee apology signals movement toward a new paradigm
There is no place for race in bioethics. That is, no place for discrimination or prejudice in medical research, medical education, or medical care. And in the other sense of the word, there’s no place or at best a limited one for professionals and patients of color in bioethics committee meetings, bioethics consultations, or professional bioethics meetings. There are few black physicians or scientists involved in research, few black participants in clinical research trials, and a shortage of organ donors among African Americans.
For some time this paucity of racial and cultural thought and values integration into the arena of clinical bioethics and an intrinsic distrust of the medical profession among blacks and other vulnerable populations has been recognized. Yet bioethics professionals, and perhaps your own institutional ethics committee or institutional review board, have viewed it as an ethical dilemma with no real solution. A new ideal is slowly emerging, however, and is being championed by the president and federal government. For the first time in U.S. history, a president apologized to a group of individuals for a breach of ethics and called for specific changes.
"To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist," President Clinton said in mid-May. "The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts."
Bioethics professionals who have examined the issue say the problem is multifaceted. Only a handful of minority health care professionals have shown an interest in the field of bioethics, but critics say few have been encouraged or invited to participate.
"Initially, it is a matter of priorities for the black professional who is still fighting to get basic recognition among his or her peers," says Kathryn Moseley, MD, director of biomedical ethics for the Henry Ford Health System in Detroit and a board member of the Society for Bioethics Consultation (SBC) in Cleveland. "We also have not done a good job of making ethics relevant to real people," she laments.
Formal ethics training not needed
"We have to re-examine the notion that all bioethics professionals must be analytical and come from a theological base," says Marian Gray Secundy, MD, director of the ethics program at Howard University School of Medicine in Washington, DC, and a former board member of the Society of Health and Human Values (SHHV) in McLean, VA.
Professionals from all the health care sciences should be encouraged and invited to develop a competency in ethical decision making that will allow them to be responsible bioethics professionals, she argues.
"My own experience here at Howard has proven that you can put together a group of professionals who have no formal training in the principles of ethics, but who can make significantly sound decisions about a wide range of ethical dilemmas," she says.
Minorities have not seen the wide range of possibilities open to them as bioethics professionals, she contends. Secundy and Moseley, who also are trained in bioethics, hope that if the nation’s three major bioethics societies merge (SBC, SHHV, and the American Association of Bioethics) later this year, a combined effort will be made to recruit more minority members. Both physicians chair a task force reviewing minority membership recruitment.
Secundy and Moseley tell Medical Ethics Advisor it is a continuous uphill struggle to make minority voices heard in bioethics discussions, yet the fight must be waged. While they are prodding their own colleagues to become more involved in bioethics, both argue that far more can and must be done to include the views of people of different ethnic and econo- mic backgrounds into everyday bedside ethics discussions.
"The impression, if not the strong indication, is that different ethnic populations make entirely different treatment decisions," Moseley says. For example, one study showed that whites were far more likely or willing to forego life- sustaining treatment than their black and Hispanic counterparts.1
Other studies point to disparities in treatment choices given to patients. One study showed racial differences in intensive care treatments, another in the diagnosis of breast cancer.2,3
One exhaustive review of Medicare data demonstrated that African American patients underwent 17 common medical procedures less often than did their white counterparts.4 (See related story, MEA, December 1996, p. 133.)
Prejudicial care and decision making is apt to occur unintentionally, these reports suggest. "Even if ethics committee members try to recognize the cultural differences, we are all still limited by what we know and what we have experienced growing up," Moseley says.
Mistrust is well-founded
There are many reasons behind the mistrust that many blacks have of the medical system, she says. "Our oral histories from our grandparents are so strong," she says. "Our family members who are now in their 60s, 70s, and 80s remember being turned away by the medical establishment.
"Our grandmother may have been the pregnant women turned away from delivering her baby at the same hospital that is now enticing her to come for all of her health care because she has a Medicare HMO."
President Clinton has taken what some see as a first step toward helping more blacks trust medical professionals by formally apologizing to the survivors of the Tuskegee study, Macon County, and the city of Tuskegee, AL, as well as "doctors who have been wrongly associated with the events." (For more information on the Tuskegee study, see story, below right.)
Aside from these national efforts, it is time for grassroots change, Clinton said. "Let us resolve to move forward together," he challenged.
African Americans are underrepresented in ethics committees and clinical research studies because they have not been recruited, charges Randall C. Morgan Jr., president of the Washington, DC-based National Medical Association (NMA), a professional medical society representing more than 20,000 African American physicians. "There has been no real concerted effort to make these areas culturally diverse," he says.
Morgan and others say blacks are underrepresented in bioethics because they are not asked to be on conference panels and because traditionally minority professional medical societies such as the NMA are not asked to nominate colleagues to important national positions.
An ethics committee, for example, can invite minority professionals from the hospital staff to its meetings and can recruit black and other minority members from among religious, business, and education leaders in the community.
"Saying you cannot interest someone in the community, or someone on the staff, in becoming a member of the ethics committee is a smoke screen," Secundy says.
Although it is incumbent upon bioethics professionals to be more sensitive to and inclusive of minorities, one major voice in the new national discussion says the responsibility also rests on the shoulders of black professionals themselves.
"There is good reason for the African American professional to become more involved," maintains Benjamin F. Payton, PhD, president of Tuskegee University and a doctor of ethics. "We must become influential and powerful and monitor all health care practices closely. Blacks must ensure that other blacks never again can be maligned as they were in the syphilis study," he says.
Payton tells other African American professionals: "Bioethics is a growing field and one of great opportunity. Become involved. Be on the leading edge of medicine."
References
1. Carlis PC. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments and euthanasia. J Clin Ethics 1993; 4:155-165.
2. Williams JF, Zimmerman J, Wagner DP. African-American and white patients admitted to the intensive care unit: Is there a difference in therapy and outcome? Critical Care Med 1995; 23:626-636.
3. Jones BA, Kasl SV, Curnen MGM, et al. Can mammography screening explain the race difference in stage of diagnosis of breast cancer? Cancer 1995; 4:2,103-2,113.
4. Gornick ME, Eggers PW, Reilly TW, et al. Special article: Effects of race and income on mortality and use of services among Medicare beneficiaries. N Engl J Med 1996; 335:791-799.
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