Race in Medicine

Troy Duster

Personal Point of Impact: Former chair of the Advisory Committee on Ethical, Legal, and Social Issues for the Human Genome Project; president-elect of the American Sociological Association; author of Backdoor to Eugenics

Technology Review: As researchers begin to better understand the genetic differences between populations, some are advocating using that information to develop and justify treatments and even particular medicines that target specific racial groups. Is this a good idea?

Troy Duster: There’s not a quick and easy answer. I think under certain conditions, in certain contexts, race can be a proxy for looking at other factors. For example, we know that sickle cell anemia in this country is related to race because Americans of West African descent are at much higher risk. Where there are limited funds for a full-population screen, it would be legitimate to set up a screening program that is race related. But that is different than saying we’re going to deliver a drug to a population defined by race. I think it is a mistake to begin with the assumption that race is a sufficiently precise category to deliver pharmaceuticals. Race is a huge and crude category with so much genetic variation that the idea of trying to come up with a drug specifically designed for such a population is counterintuitive and probably empirically wrong.

TR: And yet it is something being talked about by some drug companies.
Duster: Yes, I think it is because of profits and markets. Pharmaceutical companies don’t sell drugs to individuals; they sell drugs to markets. So part of what is going on here is a market-driven biotechnology which is trying to find a population base for its product.

TR: But as you said, there are no easy answers. Are there potential benefits in looking at genetic-based medical differences between various population groups?
Duster: It is perfectly legitimate to ask why the rate of prostate cancer is more than double for group A than group B. And when that group A happens to be blacks in America and group B happens to be whites, then we come to the critical question of how to approach “whites” and “blacks.” Given the genetic variation within any racial group, I think that the wrong approach is to assume a genetic basis as a first strategy to explain the difference. Rather, it is much more empirically valid to approach patterns of health disparities by focusing on external or environmental factors. To put it in plain language, it is fine to look at health disparities between any two groups-religious, gender, class, race, age, region of the country, et cetera-and ask why. But DNA should be the last place we look to try to explain those differences. Every molecular geneticist knows that there is far more genetic variation within what we call loosely African, European, and Asian continental ancestry than there is between these broad groupings.

TR: Yet the use of broad categories seems to be everywhere these days in medical research, from proposed U.S. Food and Drug Administration guidelines on clinical trials to reports on the success of various new drugs in a particular population. At the same time, most scientists have long maintained there is no biological basis for racial categories. How do you resolve these seemingly conflicting trends?
Duster: The contradiction is there, and it exists in the literature, sometimes inside a single article-and I must add, sometimes inside the brain of a single author. I think that the way to address the contradiction is to acknowledge that race is simultaneously a fluid, arbitrary, internally contradictory category in the way that it is used and that race is also a deeply embedded set of structural relationships between groups. Some people want to emphasize the arbitrariness of the biological category. But think of it this way: sub-Sahara Africans have the greatest genetic heterogeneity on the planet, yet when people from that part of the world travel outside of the continent, they are most likely to be treated as if they were genetically homogeneous. It is their treatment that results in patterned health disparities. The huge mistake is to then revert to the DNA, as if that were the source of the disparity.

Duster: One can possibly see some advantages, but one always has to weigh that against the downside. And in this rather volatile world of genetics and race and medicine, I think we need to be extremely careful heading down a path collecting genetic material on a particular racial group, because that very activity starts to send a message that race and genetics are much more interlinked than they actually are. My concern is with the symbolic ramifications: they’re going to get the DNA of people of African descent as if somehow that database is going to be coherent, or more homogeneous. I’m sure that [the Howard researchers] are not that nave. They are very thoughtful people who know genetics. I just think that when we learn that Howard University is collecting this database on black people, the question is, why are they stopping with black people? The implicit answer is that there is something special about the DNA of black people. The symbolic message is strong. And that’s why I think we need to be very careful when we embark on this kind of work.

TR: Have the numerous advances in genomics over the last few years affected how you think about genetic differences and various population groups?
Duster: Yes, it has forced me to sharpen my critique of the reductionist impulse in biomedicine. The Human Genome Project and other developments have given a new imprimatur of scientific legitimacy to the “genetic” or “biological” attempt to explain complex social behaviors, from crime and violence to performance on IQ tests. When I wrote Backdoor to Eugenics at the beginning of the 1990s, I was simply warning about the implications of molecular genetics as a seductive explanation for complex behaviors. Up until about 1997, behavioral genetics and molecular genetics were almost completely separate. But now we are seeing a merger of interests and concerns in the two fields. And my critique is clearer, because I see that we are moving towards abandoning any attempt to “explain” behavior, except by using the imprimatur of molecular genetics.

TR: Your perspective as a sociologist is obviously very different from that of a geneticist. What are the dynamics between sociologists and geneticists?
Duster: Everyone thinks they’re a sociologist. No one thinks they’re a geneticist unless they are trained. Even my best-intentioned colleagues will say things like, “I hope you have on your research team someone who is a geneticist.” And I wonder if I should respond, “I hope you have in your laboratory someone who is a sociologist.” The assumption is, if you’re going to be working in this area, you have to know genetics. But if you’re a geneticist, you don’t have to know anything about the sociological context of science. You’re just supposed to do good genetics.

TR: Indeed, are geneticists and medical researchers generally attuned to the social and ethical implications of their work?
Duster: There are exceptions, but in general, with bench scientists, the answer is no. Many are oblivious of the extent to which their research is generated by social concerns. Few understand the social, economic, and political origins and ramifications of their research. So as long as the funds are flowing, these ethical, legal, and social issues are somebody else’s concern.