WASHINGTONThe 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 Institutes 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 categoriesWhite, 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 were 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 NCIs 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, weve
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. Theyre
paying attention to this report. Theyre conscious of the
changing demographicsthe fact that 20% of the US population are
minorities, he said.
The IOM committees other findings and conclusions include:
The current structure and funding of NCIs 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 NCIs
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.