I am afraid of getting cancer. I'm sure I'm not alone in this. Even if you eat healthy, exercise, eschew smoking and drinking, use sunscreen, and make sure to always be upwind of toxic chemicals, there's still no guarantee you'll stay cancer-free. I mention this not to ruin your day, but by way of explaining why I use my race to mitigate my fears. Well, I might say to myself, I'm a black woman so at least I'm less likely to get skin cancer. But this delusional method of self-soothing has been in my mind ever since I read a new study from the National Cancer Institute (NCI) that reveals that African-Americans are more likely to die sooner from breast, ovarian, and prostate cancer than other patients. And this survival gap persisted even after researchers took socioeconomic factors (such as poverty and inferior health care) into account as well as access to and the quality of treatment. It wasn't all bad news for black folks: the same study concluded that this survival gap does not exist for other cancers such as lung, colon, leukemia, and multiple myeloma.
Since I regularly use the color of my skin to determine my risk of contracting a particular disease, I guess I could take this study to mean that I should be petrified of reproductive cancers but shrug off any concern about the others. And it's not just me—studies like the one from the NCI use race to make statements about the treatment of whole groups of people. Black people more commonly suffer from Type 2 diabetes, Tay-Sachs is a disease that mostly affects Jewish people, and on and on and on. In the fine print of the NCI study is the caveat that the scientists are really only talking about a percentage of these groups. This NCI study looked at 19,457 patients, only 11.9 percent of whom were African-American. Based on those numbers, any result would apply to just a slice of African-Americans, but that never makes it to the papers. It's impossible to figure out whether all black people should be worried or just the ones that fit the conditions of the study. Black people come from dozens of countries around the world from Brazil to Tobago—could it be true that we are all fighting a survival gap? And since I've been thinking about it, I've found four reasons why I'm leery of studying diseases by race.
1. Such studies cause people (like me) to divide life-threatening diseases into two groups: the ones "we" get and the ones "they" get. And that's foolish because actually when it comes to science there is no us and them. Race does not exist on a genetic level. As the Human Genome Project has so artfully put it, "DNA studies do not indicate that separate classifiable subspecies (races) exist within modern humans. While different genes for physical traits such as skin and hair color can be identified between individuals, no consistent patterns of genes across the human genome exist to distinguish one race from another. There also is no genetic basis for divisions of human ethnicity." Crazy, huh? So, while I may be less likely to get multiple sclerosis based on the color of my skin, it isn't impossible or even unlikely as Montel Williams or the late Richard Pryor make clear.
2. A rigid adherence to racial classifications in medicine may cause a diagnosis to be missed. If you're black, would your doctor be tempted to skip or delay a test for cystic fibrosis—no matter your symptoms—since African-Americans are diagnosed with CF much less often than Caucasians? Indeed, when my primary care physician insisted on giving me a skin-cancer screening despite the fact that it is white people who suffer disproportionately from skin cancer, I knew I had a keeper. "Ancestry is a risk factor for some certain medical conditions. But it's only one risk factor," Dr. Jonathan Marks, an anthropology professor at the University of North Carolina and author of the book Why I'm Not a Scientist cautioned. "Age, occupation, neighborhood are also risk factors, and they could be more important factors than race."
3. It sounds like biological determinism. If a genetic component for reproductive cancers is found among some African-Americans, why couldn't there be a biological reason for other disparities between the races? The controversial book The Bell Curve alleged in 1984 that the one standard deviation in IQs in whites and African-Americans had a genetic cause. And though the book has been roundly debunked by scientists, most famously by Stephen Jay Gould in The Mismeasure of Man, it is still referenced as proof that the differences between whites and blacks are the way Mother Nature intended them. Yet Dr. Dawn Hershman, a coauthor on the NCI study, assured me that the researchers controlled for socioeconomic factors such as income, education, and level of care. The point of the study wasn't to prove a point about black people vs. white people but to learn more about how cancer works. Why different people get different diseases or respond differently to treatment is crucial to the search for a cure. "Maybe we're not dosing people correctly, maybe we can do something different to improve treatment. Everything is multifactorial," Hershman told me. "Some of these biological factors may be determined by socioeconomic factors. We should take every care to make sure that each person receives the best care for them." So, yes, I get it. It's important to know all the factors that make a disease attack. Only then can we find a way to defeat it. So why am I still afraid that this study will be used to prove that black women are less hearty stock, and not to discover what makes a cancer more aggressive in one person over another?
4. It seems to let those aspects of disease management that are caused by inequity off the hook. If a disparity such as the one reported by Hershman and her colleagues can be explained by pointing to genetics, then it becomes harder to push for equal access to good health care. The Institute of Medicine's 2003 report "Unequal Treatment" found that African-Americans and Hispanics "tend to receive a lower quality of health care across a range of disease areas (including cancer, cardiovascular disease, HIV/AIDS, diabetes, mental health, and other chronic and infectious diseases) and clinical services."
And yet I think the NCI study is a welcome wake-up call to all of us. If black people have a poorer prognosis from prostate, breast, and ovarian cancers, then we need to figure out why. And if, as Hershman alleges, the reasons are rooted both in biology and socioeconomics, then we owe it to ourselves to explore each option. I understand earlier examples of medicine that took race into account—such as the early-20th-century push for eugenics and later the Tuskegee Syphilis Study—seriously damaged the trust that African-Americans and others had in the medical community's ability to use race as a helpful classification, but we must explore every avenue to treat disparities as we find them. "We come from a long tradition of thinking that race is a biological distinction that divides people," said Alan Guttmacher, director of the National Human Genome Project. "But it is only a halfway step toward a medical system that treats people based on their own individual biological systems." Wow, race as a path to treating people as individuals. Who'd have ever thought it?