Racial and Ethnic Categories in Biomedical Research

I recently attended a conference titled Proposals for the Responsible Use of Racial & Ethnic Categories in Biomedical Research: Where Do We Go From Here? and have been meaning to post a little something about it ever since. Basically the conference's discussion centered on a specific dilemma: Race is, many scientists argue, a biologically meaningless category (though some, including those who have a stake in BiDil, would disagree); therefore, it shouldn't be used as a category in biomedical research. Using it brings associations with biological determinism and perhaps eugenics-tinged value judgments based on racist ideologies. Plus, attributing medical conditions to race ignores a host of other factors, including location; as Morris Foster argued in his talk, participants in studies are often aggregated by race in order to make statistically significant claims, but location plays a critical role in one's health. Isn't it possible, Foster asked, that the people living in one's same town -- whether they're the same race or not -- the people one interacts with on a daily basis, have more of an effect on one's health than people of the same race who live 1000 miles away? (Especially given environmental toxins, epidemics of infectious disease, etc.) Foster supports his arguments with data from a study he's doing on three rural African American communities in Oklahoma and three local tribal communities in Oklahoma.

However, in a racist society with clear disparities in wealth that are closely correlated with race, race can't be dismissed entirely. African Americans and whites do not have equal access to health care (this includes referrals to specialists, health insurance, expensive prescription drugs, etc.), and if you do look at health problems by race, the social context of health and disease is revealed, and as common sense would tell us, there's far more to health than genetics. As Dorothy Roberts argued, reducing health to genetics and looking for a solution in a pill (which not everyone could afford) lets the state off the hook. There are good reasons, from a social responsibility/public policy standpoint, to keep racial and ethnic categories in biomedical research.

Also, Jay Cohn, the patent holder of BiDil, points out that using race as a category (in the biological-genetic sense) can save lives, as doctors can use that knowledge to tailor treatments more specifically to patients, increasing the efficacy of those treatments. Roberts countered (rightfully) by saying that she didn't want a doctor prescribing a drug to her based on what race the doctor thinks she is. Cohn replied that in the clinical trials of BiDil, participants self-identified as African American. This use of self-identification as a sort of rhetorical loophole came up several times, finally spurring me to pass a note to my advisor, who was sitting next to me, that said, "Aaargh! It kills me how they're using "self-identification" as though that were a completely unproblematic concept!"

The role of the market, which was the subject of Gregg Bloche's talk, must also get attention here. All these studies and clinical trials take place in the complex, overlapping, sometimes contradictory institutional contexts of academia, pharmaceutical companies, and government. I might say more about this later, but I'm about ready to wind up this post. The conference organizers put up an annotated bibliography (PDF) of literature on this topic, and I've listed the open-access ones here, if you'd like to do more reading:

The Racial Genetics Paradox in Biomedical Research and Public Health (PDF)

Medically, Race Means Nothing

Categorization of humans in biomedical research: genes, race and disease

Authors warn of inaccuracies concerning use of race in health & social science research

The Meanings of "Race" in the new Genomics: Implications for Health Disparities Research (PDF)

Is research into ethnicity and health racist, unsound, or important science?


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but what about...

I don't have time right now to check the links (grading finals), but what about conditions like sickle cell with black populations, and Tay-Sachs with Jewish populations? Statistically, these occur more often in particular ethnic groups, so does that count for something?

On the other side of things, I read about a study when I lived in Dublin that showed an Irish man who moved to England for work experienced the same heightened rates of heart disease, hypertension, shortened life spans, and high blood pressure as black males in the U.S. --they tracked almost perfectly. Gets right to the social conditions.

I myself just found out I have a condition called keloid scarring that occurs primarily in people of African descent. (I had knee surgery and overscarred very quickly --they had to keep ahead of the scarring, keep breaking it up.) The docs were surprised because it's not too common in white people (whatever white means --I'm a mutt). But, my grandparents did a geneology a while back and found some freed slaves in our tree, so who knows.

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