CHICAGOThe Institute of Medicine (IOM) report to the Congress
about research that relates to minority and medically underserved
populations lauded many of the efforts the National Cancer Institute
(NCI) has undertaken to conduct research and sponsor training
programs involving ethnic minorities and the medically underserved,
while making recommendations for improvement.
These aspects of the report have been largely ignored as attention
has focused on the disagreement between the NCI and the IOM over the
amount of re-sources allocated to research involving minorities and
the medically underserved (see article below).
History of the IOM Report
The IOM summary report, The Unequal Burden of Cancer: An
Congress asked for the analysis because of documented disparities in
IOM consequently convened a committee in 1998 to examine a number of
These include the share of resources allocated to cancer research for
The committee felt that NIH and NCI, although doing many
good things, were not doing enough to address the unequal burden of
cancer in minority and medically underserved populations. The
committee hoped to assist the Institutes in addressing issues related
to these populations by putting forth a reasoned critique and by
offering recommendations to improve the ways in which these issues
are addressed, Gilbert Friedell, MD, said in an interview with
Dr. Friedell is director emeritus of the Markey Cancer Center,
University of Kentucky, Lexington, and a member of the IOM Minorities
and the Medically Under-served Committee.
The report stated that the committee was impressed by the
momentum surrounding these issues at NCI, and said that some of the
recommendations were already in the process of being implemented
before the report was completed. The committee has felt free to
make its recommendations always with the best interests of the
populations concerned in mind and with the hope that the already
excellent leadership provided by NCI will become even better,
the report said.
Several committee recommendations dealt with the collection of data.
While noting that the Surveillance and Epidemiology End Result (SEER)
program does an outstanding job of accumulating data, the committee
advocated increased funding to expand the program, include a wider
range of demographic and social characteristics, and reflect the
diverse characteristics of the US population.
The committee felt that annual reporting of cancer surveillance data
and population-based research should include survival information on
all ethnic groups.
It also advised the NCI to work with the North American Association
of Central Cancer Registries and other organizations to improve the
coverage and quality of the 45 non-SEER program state cancer
registries in order to achieve a truly national dataset and a
reliable database for every state.
We are suggesting not to abolish the state registry or have one
national registry but that we have more cooperation between the SEER
program and the state registries, said M. Alfred Haynes, MD,
former president and dean, Drew Postgraduate Medical School, and
former director, Drew-Meharry-Morehouse Consortium Cancer Center,
Rancho Palos Verdes, California. He spoke at the Second Annual Cancer
Care Symposium, sponsored by the Robert H. Lurie Comprehensive Cancer
Center of Northwestern University.
The committee commended the NCIs planned effort to expand
behavioral and epidemiologic research in order to examine the
relationship between cancer and cancer risk factors associated with
ethnic minorities and medically under-served groups.
This is an area where NCI already has been doing a very
important body of work, IOM project director Brian Smedley,
PhD, told ONI. The committee urged that NCI further enhance these
efforts by identifying behavioral and social science research as one
of its highest priorities and by focusing on cancer prevention,
control, and treatment needs of ethnic minorities and the medically underserved.
Race vs Ethnic Groups
One of the most controversial areas of the IOM committees
report asked that NCI replace the use of the word race
with ethnic groups in its cancer surveillance and
What we currently refer to as racial groups are more
appropriately termed ethnic groups, according to the report,
Dr. Smedley said. Thus, African Americans represent an ethnic
group, and, similarly, European Americans, American Indians, Asian
Amerians, and Hispanics, each constitute an ethnic group.
Dr. Haynes added, The committee came to the conclusion that we
ought to discontinue the use of race purely on scientific grounds.
There is no scientific evidence to date that will justify the
classification of human populations into four or five or six
different racial groups. There is so much diversity within groups and
between groups that each of us is unique.
The minorities committee also wanted to emphasize the fact that
lifestyle, diet, and habits have a great deal to do with the
development of cancer. By emphasizing ethnic groups, we felt we
could more fully explore these factors, Dr. Haynes added.
The committee asked NIH and other federal agencies to address the
issue of funding for clinical trials, especially to cover the
additional costs of diagnostic tests and therapeutic procedures when
third-party payment barriers exist, and to apply a consistent
definition of medically underserved populations when accruing and
retaining individuals in clinical trials. Such a definition should
take into consideration such factors as rural or urban residency,
insurance status, socioeconomic status, and literacy level.
The committee advocated better coordination among programs across NCI
in order to address the needs of ethnically diverse and medically
underserved populations as well as collaboration between NIH and
research and medical institutions that serve these populations.
It felt the Office of Research on Minority Health should assume a
more active role in the coordination, planning, and facilitation of
research that is relevant to ethnic minority and medically
The panel called for greater numbers of ethnic minority investigators
as well as greater representation of ethnically diverse researchers
and members of the community on NIH advisory and program review
Finally, the committee suggested that the NIH adopt a mechanism for
reporting to the US Congress that:
Reports on the progress against cancer made by ethnic groups rather
than racial groups and includes data on medically underserved
populations within ethnic group data.
Provides data on the incidence of cancer at several cancer sites,
including those cancers that disproportionately affect ethnic
minority and medically underserved populations.
Considers reporting mortality data in terms of the potential
reduction in deaths, a statistic that is based on the lowest
mortality rate among US ethnic groups and that emphasizes the need
for cross-cultural studies to ascertain optimal strategies for cancer
prevention, treatment, and control.
Links research findings to reductions in cancer incidence and
mortality, and identifies any gaps in the linkage.
Reports on process developments, such as the number and type of
research programs specifically targeted to ethnic minority and
medically underserved groups and the contributions of ethnic minority
scientists and community groups to the process of setting research priorities.
Dr. Friedell said that no formal response to the IOM report has been
issued by the NCI or the NIH. It is incumbent on NIH and NCI to
look hard at the recommendations in this report and respond to them.
These several hundred pages deserve a detailed comment. I regret that
one hasnt been forthcoming, he said.