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Why Racial Profiling Persists in Medical Research

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While the rest of the country wrangled over the behavior of police officers in the wake of the Henry Louis Gates arrest last month, 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.