RACISM HAS AN IMPACT ON RESEARCH AND HEALTH CARE POLICY
Author: Lovell Jones
Date: February 17, 1997
The Scientist
Illustrator: John Overmyer Benign neglect, or ignoring an often
undesirable situation rather than dealing with it, is an attitude with
which minorities are quite familiar. Couple it with politics and
racism, and you face a system that has been unresponsive to the
educational, research, and health care needs of minorities and the
poor in the United States.
Few mainstream research institutions or government agencies have
addressed minority health in a proactive manner. Most take a reactive
approach-because someone pressures them, or in response to recent laws
requiring involvement of women and minorities in clinical trials, or
because they are trying to secure additional money targeted for
minority health issues. A few institutions, such as the National
Heart, Lung, and Blood Institute, have had a true interest in
addressing health issues in minority populations.
This is not say that other effective research efforts dealing with
minority populations are not taking place. On the contrary, they are.
However, most efforts lack a clear focus on minority health issues. As
a result, they have been neither culturally competent nor culturally
relevant. When the staff of a hospital deals with the health problems
of minority patients without the training, insight, or sensitivity
needed to approach these individuals, efforts are doomed to failure.
You might not see this as racism, but I do.
As a scientist who happens to be a member of a minority group, I am
especially concerned about this lasting impact of racism and benign
neglect on the health of minorities and the medically underserved.
Despite protests to the contrary, minorities who act on this concern
are generally stereotyped by some in the scientific community as not
being real scientists.
The question is: Can you judge the content of someone's mind when you
have already stereotyped him or her on the basis of race? Supreme
Court Justice Thurgood Marshall once stated that he had never been
anyplace in the U.S. where he had to put his hand up in front of his
face to know he was black. He was alluding to the fact that lurking in
the minds of many Americans was the idea of the fundamental
inferiority of minorities, especially African Americans. This attitude
still exists today, even in the areas of health and education.
The discipline of science knows no color. The pursuit of determining a
reason for a situation should not be different. Yet when minorities
try to address the disparities of one group in relationship to
another, it is viewed as affirmative action. Ultimately, this limits
the number of individuals-especially minorities-who investigate these
health disparities.
Is this a product of stereotyping and the ultimate value one places on
the health of minorities and the medically underserved? In most cases,
it is. For example, cancer is a major cause of death in minority
populations, yet we know very little about this disease in these
populations.
Filling The Pipeline
We can seriously address the need to involve more minorities in
sciences. I need only point to the Meyerhoff Scholars' Program run by
Freeman A. Hrabowski III at the University of Maryland, Baltimore
County, as an example. Among the undergraduates at this majority
institution are the young Meyerhoff scholars, who are both valued and
mentored. Within this group are academic stars with perfect math SAT
scores, athletes who never earned below an A through high school and
college, kids under 20 years of age whose work has been published in
scholarly journals, and students who regularly earn A's in such
courses as genetics and organic chemistry.
But don't assume that all of these students are from the top prep
schools. Many of these students are minorities from poor families and
went to public schools in inner-city or rural communities. Given a
nurturing environment, these students-like all students-can succeed.
Unfortunately, such programs that value and mentor minority students
do not exist across the country. We talk about the lack of minority
scientists and pipeline issues, yet such programs are rarely
highlighted or, worse, not duplicated.
The lack of diversity does impact research agendas and national health
policy issues. It accounts for the continuing problems our leading
research institutions face in terms of the recruitment/retention of
minority researchers, the recruitment of minorities and the medically
underserved to clinical trials, as well as the involvement of minority
scientists in health issues directly related to minority communities.
If we are going to address the health crisis in medically underserved
communities effectively, we are going to need more programs like
Meyerhoff that mentor and build self-confidence.
Equally important is redefining how we value the efforts of minority
scientists and physicians who address health issues involving the
medically underserved. Minorities who have become involved in such
efforts are generally made to feel unequal in the eyes of scientific
colleagues who don't value their contributions. For example, their
work in minority communities is less valued when compared with that of
white scientists, who are generally praised for their scientific
efforts in these communities. This inequity must be seriously
addressed.
Overcoming Devaluation
In wearing two hats at the University of Texas M.D. Anderson Cancer
Center-as director of the Experimental Gynecology-Endocrinology
Laboratory and as an activist-I have faced all of the challenges
mentioned. I took on the role of activist against the advice of
numerous friends and colleagues who said that I would be jeopardizing
my career as a scientist. Knowing that few minority scientists were in
a position to focus on the cancer crisis occurring in underserved
communities, I took on the challenge. I can personally say that the
advice I received reflects the perception and attitude that any
activity involving minorities-even activities dealing with health
issues-are not valued. Unfortunately, the health care of minorities is
adversely affected by this lack of value. At the professional level,
devaluation revolves around the attitude that if you are involved in
this effort, then you don't have time or you can't compete in the
scientific arena. Value is placed on the number of papers you produce
and the not the lives you might save!
I grew up with science in my blood: My mother was a junior high school
science teacher. I was sure that I could prove all of my friends
wrong, that both research and activism could be performed equally
well. Little did I realize the full impact of turning my attention to
the health needs of minorities and the medically underserved. However,
as Henry David Thoreau wrote: "If one advances confidently in the
direction of his dreams, and endeavors to live the life which he has
imagined, he will meet with success." Unfortunately, Thoreau did not
live in 1990s America. This is not to say that I have not been
successful. But the price of success has been one I would not wish on
anyone.
Success for me has had many faces: the opportunity to organize the
Biennial Symposium Series (BSS) on Minorities, the Medically
Underserved, and Cancer for the past 10 years as well as the recent
accomplishments of the Intercultural Cancer Council (ICC). The BSS has
become one of the most successful meetings attempting to provide a
stage on which to spotlight the disproportionate incidence of cancer
morbidity and mortality in minority and medically underserved
populations in the U.S. Although in existence for only about 18
months, the ICC has attracted much attention to the issues surrounding
cancer and the medically underserved, including coverage in the print
media, professional society publications, and the Congressional
Record. All of this occurred while I maintained an active and
successful basic and clinical research program.
Unfortunately, the successes of the ICC and the BSS have cast a
negative shadow over the research program. In 1996 I was nominated and
selected by the University of Texas M.D. Anderson Faculty Senate for
the Faculty Achievement Award in Cancer Prevention. The perception
that soon surfaced was that the award was given because it was the
"politically correct" thing to do and not for meritorious
accomplishments. This might sound personal; to some extent, it is.
However, what happened to me occurs more often to scientists of color
than people would like to admit.
These indignities, this lack of true recognition, occurs on a daily
basis, and discourages many from speaking out and taking a stand.
Risk Attention
Lovell Jones is a professor of gynecologic oncology, molecular
biology, and biochemistry and director of experimental
gynecology/endocrinology at the University of Texas M.D. Anderson
Cancer Center in Houston.
The ICC and BSS has been successful because of the unique blend of
individuals willing to step forward to speak with one voice. These
individuals believe that we all have something to contribute and that
together we can make a difference. However, the BSS would not have
survived its infancy if two special individuals had not stepped
forward to accept part of the risk: Joseph Stewart at Kellogg Co. of
Battle Creek, Mich., and Armin Weinberg, director of the Center for
Cancer Control Research at Baylor College of Medicine. They were
willing to accept the risk of being labeled as "troublemakers."
Unfortunately, few minority scientists are willing to take this risk,
and understandably so. Therefore, the system that fails to address the
health care needs of their fellow citizens is seldom challenged in an
effective manner. The ultimate result is benign neglect.
Benign neglect can be hazardous to your health! For example, a group
of African American breast cancer survivors have been interviewed for
eligibility for a clinical study. Like my mother, they were
well-educated, middle-income individuals, and most had had radical or
modified radical mastectomies with no follow-up care. This group of
women had a large number of their friends with breast cancer die this
past year. I don't know whether all of the African American breast
cancer survivors from this group did not have follow-up care. Does a
high mortality rate in a small group lead one to speculate about the
level of care? On the other hand, one might say that other factors
were at work. However, at the same time, most of the white females
from varying economic backgrounds who had the same type of surgery
were enrolled in the same study, and most had follow-up care.
The impact of stereotyping/value/racism on the health of America is
not just my perception: It is my reality. If you tie people's value to
their skin color, their health is not a separate issue. For me
personally, I had the unique opportunity to be valued as a human
being. That occurred on a recent trip to Australia. Imagine, giving a
presentation on the health of a human population and not having it
stereotyped as minority stuff, but having it truly valued. If only
this could occur in America! The ultimate result would be that all of
the special efforts to address the issues of minorities and the
medically underserved would be null and void and we would only be
addressing the health of all Americans as human beings!
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