While the rest of the country wrangled over the behavior of police
officers in the wake of the Henry Louis Gates arrest in July 2009, some
scientists were pulling out their hair over racial profiling of a
different kind: that perpetrated by medical researchers. Experts within
the research community say a small but stubborn streak of racial
profiling has long persisted in the medical literature, borne out in
studies that attribute health disparities between blacks and whites not
to socioeconomics or access to health care alone but also to genetic
differences between the races — a concept that implies that a
biological category of race exists.
The controversy resurfaced in July with the publication of a study in the Journal of the National Cancer Institute (JNCI)
in which researchers analyzed more than 19,000 patients who
participated in clinical trials involving treatments for a variety of
cancers. The paper found that all other factors being equal, black
patients had on average a significantly lower cancer survival rate than
whites. Given that all patients were participating in the same clinical
trials, the authors said, there was no difference in terms of access to
care. Researchers said also that even after adjusting for patients'
socioeconomic status, the survival gap between black and white patients
remained for three of the cancers studied: breast, ovarian and
prostate. "There is a considerable difference in the statistics.
Something big is going on among people who are getting equal care,"
says lead author Kathy Albain, a breast and lung cancer specialist at
Loyola University's cancer center. That something, the authors
concluded, must be some unknown biological or genetic factor that
differs by race.
That conclusion, critics quickly responded, was flawed. "Race is a
sociological concept, not a biological category," says Otis Brawley,
the chief medical officer for the American Cancer Society, who wrote an
editorial accompanying the study. "But this study brings race into
medicine as a biological categorization." According to the Human Genome
Project, people are indeed well over 99% identical; at the molecular
level race is imperceptible. But even while Albain's and other similar
studies don't do much to shift the prevailing medical opinion — that
disparities in health are fueled mainly by socioeconomics and access to
care — they remind us that antiquated and unscientific ideas about race
are alive and well in medical research in America.
To be sure, no one is accusing authors like Albain of racism, and
people on both sides of the debate want to save lives. But the
treatment of race by some medical researchers continues to create a
stir. Lisa Carey, a breast cancer specialist at the University of North
Carolina, believes that biological differences may well contribute to
differences in health, such as the one Albain found, but that any
discussion of race turns automatically contentious. "The idea of
differences between races has been fraught with misuse over the years,
and not just in medicine. Everyone is leery that it could be misused
again," she says. "So we have to be careful how we interpret it, but
that doesn't mean we should ignore it."
Every few years, in fact, a new study like Albain's materializes,
each following a remarkably similar logic: Researchers identify a
disparity in health outcomes (cancer survival or response to treatment,
for example) that falls along racial fault lines; investigators then
adjust for socioeconomic status, and, when the disparity persists,
conclude it must be genetic. That consistent failure of reasoning
bemuses Jay Kaufman, a McGill University professor of epidemiology who
studies health disparities. "Why are we still doing this study?" he
says. "If you are trying to make the argument that [different health
outcomes] must be genetic by exhausting other possibilities and saying
what is left over must be genes, well, that's never going to work.
There are a million things that affect people's lives. If you think
it's genes, then measure genes."
For Albain's part, she says race is a surrogate for unknown genes —
which, scientists agree, play a significant role in health outcomes.
"When we find out what the [genetic] 'it' is, we will be able to test
everyone for 'it' and we will find some Caucasians who have it and some
blacks who don't and we won't be talking about black and white
anymore," she says. Still, geneticists point out that hereditary traits
follow ancestral lines, not racial ones. And race in America, as it is
socially defined, constitutes such broad categories that it is a crude
— arguably useless — proxy for genetics.
Yet such studies insistently conclude that, having controlled for
socioeconomics, there must be some unknown biological factor (as
opposed to some unknown social or cultural factor) at play, says David
Williams, a Harvard professor of public health and African American
studies. "The biology is a fall-back black box that many researchers
use when they find racial differences," he says. "It is knee-jerk
reaction. It is not based on science, but on a deeply held, cultural
belief about race that the medical field has a hard time giving up."
This is a uniquely American phenomenon, experts say. In other
countries, information about race is usually not available to medical
researchers, as it isn't collected in census data or in birth and death
certificates. In some countries, such as Canada, medical researchers
can choose to ask about race, but in other places — France, for example
— researchers have a hard time winning approval for any study that
specifically involves participants' race. Meanwhile, in the U.S., not
only is racial data ubiquitous, its inclusion is mandated by the
government in certain medical studies. The 1994 National Institutes of
Health Revitalization Act calls for the reporting of racial differences
when analyzing treatment effects in clinical trials.
It is that pattern of categorization that makes possible the
approval of drugs like Bidil, a heart failure drug that became the
first U.S. medication to be approved and marketed expressly for black
people, in 2005. But after approval, a deeper look at the research
showed that clinical trials of Bidil — a combination of two generic
heart drugs — involved only self-described African Americans, and that
the drug was not useful for all blacks and very useful for some whites.
In other words, the utility of the first race-based drug was not
defined by race at all.
In the wake of the Bidil controversy, a poll of some 600 physicians
across the country, conducted by a marketing and research firm, found
that 81% of doctors still believed race should be used as a biological
basis for diagnosing disease.
In a more recent study, published in Cancer Prevention Research,
investigators sought to explain another race-based disparity, that
whites survive certain head and neck cancers more often than blacks.
There was a biological mechanism at play, the authors found: the
presence of the sexually transmitted human papilloma virus (HPV), which
appeared to protect patients with oropharyngeal cancer. HPV-positive
patients had a five times higher rate of cancer survival than
HPV-negative patients; as it turned out, whites had a nine times higher
rate of HPV infection than blacks, which the researchers believed
largely explained the difference in survival.
The question is, Why the difference in HPV infections? It could have
to do with the fact that young white men practice oral sex more often
and earlier — a common way young people acquire HPV — than black men,
according to statistics from the Centers for Disease Control and
Prevention. So, with this particular cancer, the survival gap may well
be attributed to sociocultural differences in sexual habits, says
Brawley, who wrote an editorial accompanying the study. In the hands of
another researcher, he says, perhaps these findings would have been
chalked up to some unknown biological difference involving race.
Fundamentally researchers do not dispute the fact that biology —
namely genetics — helps determine individual health outcomes. But the
practice of categorizing patients by race has yet to further the
discovery of significant gene mutations. What's more, say critics, it
promotes racial thinking while dismissing the more germane issue of
socioeconomics. Indeed, Albain and her coauthors used a single, widely
disputed metric in their study — patients' zip codes linked to census
tract data — to "adjust" for socioeconomic status. Yet researchers know
that people living within one zip code can include the city's
wealthiest and poorest residents. And even if zip codes were a
trustworthy indicator of income and education, they would still be
insufficient to level the socioeconomic playing field. As previous
studies have shown, whites have more wealth than blacks at every level
of income, and at every level of education whites get more returns on
their studies. To close the gap in health outcomes, thus, the key is
perhaps not to control for socioeconomic disparities but to try to
eliminate them altogether.
