Minorities Seek Presence On Cancer Review Panels

The mortality rate for prostate cancer is twice as high for African American men as it is for white men. The mortality rate for breast cancer is 1.35 times higher for African American women than for white women. Because of these discrepancies, reported by the National Center for Health Statistics, review panels that make cancer research funding decisions should include more African Americans, contend minority cancer advocates. "Without representation, there's not going to be funding," says W. Bedford Waters, chairman of the urology section of the National Medical Association, a Washington, D.C.-based professional organization for African American physicians. And without funding, science lacks the firepower to ask questions about the cause of the discrepancies, maintains Waters, a professor and associate director of urology at Loyola University Medical Center in Chicago. "Is it genetic? is it environmental? Is it dietary?" he asks. Those unanswered questions prompted the American Cancer Society's (ACS's) recently released plan for more research in prostate cancer. The plan, released in January, calls for more research in prostate cancer, especially in African American men. It also calls for greater involvement of African Americans in all stages of research design, including on research review panels. The plan resulted from the efforts of more than 260 representatives from minority professional and advocacy groups who attended the National Leadership Conference on Prostate Cancer in African Americans last November. The meeting was cosponsored by ACS, the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention. Among those who worked to develop the plan at the meeting were minority representatives from professional groups like the Washington, D.C.-based National Medical Association and minority advocacy groups like Atlanta-based 100 Black Men of America Inc. TRUST FACTOR: Involving minorities in all stages of research design will curb distrust in their communities, says ACS's John Kelly. Greater minority representation on research review panels could help exorcise some demons, like the Tuskegee Syphilis Study, contends John R. Kelly, vice chairman of the ACS board of directors and executive director of the Navy's Family Service Center in Gulf Port, Miss. In that study, 400 African American men, who were not told of their disease, were denied antibiotics while the disease progressed. "African Americans tend to be somewhat suspicious of the health care system," Kelly observes. Greater involvement of African Americans at all stages of research design and implementation will build trust, he says. Without that trust, many African Americans will remain reluctant to participate in clinical trials, even if the data gathered may eventually help them (T.W. Durso, The Scientist, Feb. 17, 1997, page 1). The two biggest federal funders of cancer research-NCI and the Department of Defense (DOD)-take different approaches to minority representation on review panels. NCI, like the rest of the National Institutes of Health, requires only that panel selection not be discriminatory. DOD recently has taken more of an activist approach, seeking to boost minority representation on some of its panels to a third or more. NUMBERS ISSUE: NCI's Otis Brawley thinks more minority scientists are needed in general. However, some obstacles to greater representation exist. The most daunting may be the dearth of minority scientists, says Otis W. Brawley, director of NCI's Office of Special Populations Research. "The NIH does have a commitment for diversity, and it is fair to say that it is part of the NIH culture almost as if it were a rule." But raising minority representation levels on review committees could prove challenging, he adds. "Sometimes it is difficult because of the paucity of black scientists," Brawley explains. "It's a question of availability." That limited availability often means minority scientists are asked to serve on review committees more often than their non-minority colleagues. Honoring every review committee request could actually hurt their careers by cutting into their teaching or research time (R. Finn, The Scientist, Jan. 5, 1998, page 13). "I have advised young minority scientists to be very careful about being on review committees," Brawley says. "You could be in Washington every week." He recalls one instance in which he helped one young minority scientist pick a few review boards from more than a dozen that he had been asked to join. Although Henry Stevenson-Perez, senior NCI investigator and past president of the U.S. Department of Health and Human Services' Hispanic Employee Organization, favors more minority representation on review committees, he doesn't expect affirmative action mandates to deliver it-especially in light of the minority scientist shortage. "There's a backlash against [affirmative action]," he says. "Scientists resent the intrusion." Instead, scientists need to establish a biological basis for giving special considerations to minorities in drug studies. If such biological differences are established, then reviewers will have to take those differences into account as they review the legitimacy of a proposal. Then, at each stage, reviewers will be more likely to ask questions, such as: "Is this treatment really effective for all cancer patients? Is this treatment really safe for all cancer patients?" To ensure that more reviewers make such considerations, Stevenson-Perez suggests more training for people serving on review panels. Such training might include examining how a trial aims to reach different populations and judging which institutions and investigators have established a good track record in including minorities in clinical trials. "These questions don't get asked enough in primary review." Stevenson-Perez says he would have no objections to a review panel composed of 100 percent white males, if they all received proper training in how to determine if the applicants made proper provisions to include minorities in drug development and clinical trials. DOD's cancer programs feature two tiers of review. At the first level, scientists review and rate proposals. At the second level of review, integration panels-made up of scientists from basic and applied backgrounds, cancer survivors, and representatives from advocacy groups-determine funding amounts for the highest- rated re-search proposals. The integration panels for breast cancer and prostate cancer re-search mark one of the most aggressive efforts to include minorities on review committees. Brawley, who also is a member of DOD's integration panel for prostate cancer, recalls serving with a native Hawaiian and two African American prostate cancer survivors at one meeting. While Brawley favors mixing cancer survivors and scientists on review panels, he acknowledges that two separate agendas that should peacefully coexist sometimes clash. Most basic research, he contends, benefits everyone-regardless of race or class. Brawley points to breast cancer research at NCI as an example. "At one level, everything we do in breast cancer helps everyone-black women with breast cancer, Hispanic women with breast cancer, white women with breast cancer," Brawley says. However, a second level of epidemiological research asks questions about anthropological, cultural, and behavioral roots of the disease. "This is an area I would like to see more work in." Some minority members of the breast cancer integration panel reject the argument that general cancer research helps everyone. Lovell Jones, professor and director of experimental gynecology/endocrinology at the University of Texas M.D. Anderson Cancer Center, believes that the review panel should direct more emphasis on why the disease disproportionately kills more African American women than any other ethnic population, instead of having a broader focus. "Some individuals feel if you solve the problem of breast cancer in white females, you'll solve the problem for everyone," Jones asserts. The discrepancies in mortality rates between African Americans and white women are too big for that to be an acceptable approach, he says. Greater minority representation on the breast cancer and prostate cancer integration panels would likely place heavier emphasis on research that examines why the incidence and mortality rates vary for different ethnic groups, Jones says. BEYOND TOKENISM: National Breast Cancer Coalition's Fran Visco supports minority representation, but not at the expense of experience. However, efforts to increase the number of minorities on the breast cancer integration panel have led to some turbulence, he recalls. Until January 1997, only one minority woman sat on the 24-member integration panel. Jones challenged Brig. Gen. Russ Zajtchuk, who heads the U.S. Army Medical Research and Materiel Command, which administers DOD's breast cancer research program, to address that imbalance. Zajtchuk then asked Jones to join the panel and sought out other minorities. He also formed a Minority Initiative Committee to make recommendations for increasing the number of minority scientists submitting research applications and improving the quality of those applications. In 1997, seven minorities sat on the breast cancer panel and four served on the prostate cancer integration panel. At a recent meeting for the breast cancer research project, Zajtchuk stated that he would like to see the integration panels have 50 percent minority membership and commented on the lack of minority representation on the scientific panels. Some members of the panel criticized that goal, he says. "No one was concerned when there was underrepresentation," Zajtchuk says. "Now people are concerned about overrepresentation." He remains convinced that emphasizing the second level of research-examining why cancer affects minorities groups differently- addresses a need that has not been met. Bringing more minority opinions into the review process provides needed balance, Zajtchuk says. However, Fran M. Visco, president of the Washington-based National Breast Cancer Coalition, which lobbied for the research funds, cautions against "putting people at the table because they happen to be a minority." Visco, who is a member of the breast cancer integration panel, notes that minority representation on the panel is higher than in similar programs. She supports Zajtchuk's diversity efforts as long as new members meet the criteria of having both experience and a constituency. "We're not trying to get different minority representation at the expense of quality."

Minorities Seek Presence On Cancer Review Panels

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