IOM Urges Replacing Race With Ethnicity in Cancer Studies

WASHINGTON—The National Institutes of Health should greatly expand its efforts to determine why minorities and medically underserved populations, including Appalachian whites, have widely varying cancer burdens, compared with the overall US incidence and mortality, a new Institute of Medicine (IOM) report says.

The report urges abandoning race and using ethnicity to study cancer trends among Americans. And it recommends revising the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program so that it adequately covers unrepresented ethnic groups, such as non-Mexican Hispanics, and provides a more useful and representative cancer database.

“With the population becoming increasingly diverse, it is critical that we learn why some ethnic minorities and the medically underserved are more prone to cancer and less likely to survive it,” said M. Alfred Haynes, MD, former president and dean of the Drew Postgraduate Medical School, Los Angeles.

Dr. Haynes, who chaired the 15-member committee that compiled the report, “The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved,” spoke at a press conference held to announce its release.

The NCI, following guidelines set by the White House Office of Management and Budget, classifies people in cancer trials by four racial categories—White, Black, Native American, or Asian or Pacific Islander. “This method of classification was not intended for epidemiologic research and, in fact, is not consistent with current scientific thinking,” Dr. Haynes said.

Race implies genetics, added Susan C. Scrimshaw, PhD, dean of the School of Public Health, University of Illinois at Chicago. “In fact, there can be greater genetic variability within what we call a racial ethnic group than between groups,” she said. “Ethnicity refers to a group of people who share values, behaviors, and customs. Again, there are variations, but within this set of values, behaviors, and customs are many of the behaviors we are trying to understand in relation to cancer.”

Even terms such as Asian, Latino, or African-American can be too broad, Dr. Scrimshaw added. “There is so much diversity within these groups, and for the kind of work we’re doing, it is very important to be able to look at differences in, say, Latinos of Mexican origin and Latinos of Puerto Rican origin,” she said.

The committee noted that NIH, particularly through NCI, funds an array of research projects and training programs to address cancer among minority groups. However, it said, NIH appears to have no blueprint or strategic plan to direct or coordinate these efforts, a flaw the agency needs to correct.

Indeed, the panel questioned NCI’s assessment that it allocated $124 million in fiscal year 1997 to research and training efforts aimed at minority and medically underserved groups. It put the figure at $24 million, or about 1% of the NCI budget. [See page 8 for a response by NCI Director Richard Klausner, MD.]

NCI derived its estimate from the percentage of minorities enrolled in research studies, and the committee based its estimate on the number of projects specifically focused on minority health issues. “We believe the NCI should base its estimate on the research question involved rather than on the percentage of minorities in studies,” Dr. Haynes said.

The committee freely acknowledges that its proposals would require additional funds. “There is no free lunch,” said Gilbert Friedell, MD, director emeritus of the Markey Cancer Center, University of Kentucky, Lexington. “If we want to deal with cancer in the medically underserved and ethnic minorities, we’ve got to pay for it. This should not come as a shock to anybody.”

NCI has responded positively to the IOM assessment and recommendations, said Moon S. Chen, Jr., professor of health behavior and health promotion, Ohio State University. “They’re paying attention to this report. They’re conscious of the changing demographics—the fact that 20% of the US population are minorities,” he said.

The IOM committee’s other findings and conclusions include:

The current structure and funding of NCI’s Office of Special Populations Research renders it unable to adequately address the needs of ethnic minority and underserved peoples.

Research has so far failed to take advantage of the diverse populations of the United States in understanding the cause of cancer and reducing mortality. However, the panel said that NCI’s recently established Divisions of Cancer Prevention and Cancer Control and Population Sciences offer great promise in these areas.

A thorough assessment is needed to determine if training programs are producing adequate numbers of minority cancer researchers.

NCI has been inconsistent in increasing the number of scientists, consumers, and community members from minority and medically underserved communities on its advisory panels and committees.

The process that sets research priorities at NCI and NIH fails to serve the needs of minorities and medically underserved groups.

Ethnic minority participation in NCI-supported treatment trials appears to be proportional to the incidence of cancer in these groups, but is lower than expected in cancer prevention trials.

In developing ways to disseminate information to cancer patients, clinicians, and others, NCI has devoted too little attention to reaching minorities and the medically underserved and has failed to evaluate the effectiveness of materials aimed at them.

A strategic plan is needed to address the needs of cancer survivors in ethnic minority and medically underserved groups.