N Engl J Med, Vol. 344, No. 18 May 3, 2001
RACIAL PROFILING INMEDICAL RESEARCH
Race is a social construct, not a scientific classification. In a 1999
position paper, the American Anthropological Association stated the
following: It has become clear that human populations are not
unambiguous, clearly demarcated, biologically distinct groups. . . .
Throughout history whenever different groups have come into contact, they
have interbred. The continued sharing of genetic materials has maintained
humankind as a single species. . . . Any attempt to establish lines of
division among biological populations is both arbitrary and subjective.
Racial identification does have importance in the formulation of just and
impartial public policies. However, recently released data from the 2000
U.S. Census show that even self-identification of race can be problematic.
Following the decision by the Office of Management and Budget to allow
multiple responses to a question on racial identification in the 2000
Census, almost 7 million people identified themselves as members of more
than one race; about 800,000 respondents said they were both white and
black. This degree of multiracial identification underscores the
heterogeneity of the U.S. population and the futility of using race as a
biologic marker. It is indisputable that social perceptions of what a
person is or is not influence the availability, delivery, and outcome of
medical care. It is incontrovertible that these perceptions apply with
dismaying regularity to black people and other minorities in the United
States. And it is undeniable that lifestyle, socioeconomic status, and
personal beliefs are powerful influences on health. But these are matters of
morality and culture, and we must clearly distinguish them from the biologic
aspects of race-based medicine —from the danger of attributing a therapeutic
failure to the patient’s “race” instead of looking for the real reason.
Sadly, the idea of race remains ingrained in clinical medicine.
On ward rounds, it is routine to refer to a patient as “black,” “white,” or
“Hispanic,” yet these vague epithets lack medical relevance. A racial
designation in the context of medical management not only defies everything
we have learned from biology, genetics, and history but also opens the door
to inequities in medical care. Recently, the possibility of marketing drugs
with the aim of promoting their use in particular races has emerged. But
since “race” is biologically meaningless, how will a physician know whether
a given patient (who may identify with two races) has the combination of
alleles that will ensure the efficacy of the drug? And what effect will
racial profiling in the choice of therapy have on the bond of trust between
patients and physicians? Beyond the bedside, race-based medical research is
widespread. The pseudoscience of race is well represented in clinical
investigations. In March 2001, under the search term “Negroid race,” Medline
contained 13,592 citations, of which 1301 appeared in 1999 or
2000. Among these studies are race-based investigations of lipid metabolism,
renal function, responses to vasodilators, sexual maturation, drug
metabolism, neurodegenerative diseases, and even Dupuytren’s contracture.
Such research mistakenly assumes an inherent biologic difference between
black-skinned and whiteskinned people. It falls into error by attributing a
complex physiological or clinical phenomenon to arbitrary aspects of
external appearance. It is implausible that the few genes that account for
such outward characteristics could be meaningfully linked to multigenic
diseases such as diabetes mellitus or to the intricacies of the therapeutic
effect of a drug. Some geographically or culturally isolated populations
can properly be studied for genetic influences on physiological phenomena or
diseases. The Pima Indians, who have unusual susceptibility to
noninsulin-dependent diabetes mellitus, and the people of a plausible,
clearly defined, and testable hypothesis. Before studying a possible
relation between skin color and sodium excretion, for instance,
investigators should have a credible reason for believing that such
a link could exist and a plan for finding the relevant genetic network.
Research to root out social injustice in medical practice needs continued
support, but taxsupported trolling of data bases to find racial distinctions
in human biology must end. Nature Genetics now obliges authors to “explain
why they make use of particular ethnic groups or populations, and how
classification was achieved.” The requirement to furnish a scientifically
valid definition of the population under study should be adopted by all
biomedical journals. It will be difficult to abandon long-held
preconceptions, but perhaps the first benefit of the Human Genome Project
will be to lead us to the understanding that in medicine, there is only one
race — the human race.
ROBERT S. SCHWARTZ , M.D.