Although extracting DNA information seems like a cut-and-dried scientific process aimed at improving health, among other things, it is so closely tied to the complicated issue of race in this country that it seems impossible to separate the two.
Recent discoveries about our genetic makeup have turned medicine, science and even our legal system into high-stakes players in a DNA lottery, one that could affect the treatment people receive for cardiac care, diabetes and other diseases. As the scholar Henry Louis Gates Jr. recently cautioned, "we are walking a fine line between using biology and allowing it to be abused."
In fact, it was Gates' DNA ancestry-for-television specials that prompted a lot of folks to look into their roots. Some African Americans have been swabbing their cheeks and sending the collected DNA sample through the mail to companies that promise to reveal their African ancestry.
But there are problems with these revelations. They begin with technical issues about the accuracy of the samples, and take on greater significance as researchers and physicians use the category of race to make treatment determinations. Police and FBI databanks also have collected samples to identify alleged criminals or their family members. It seems that there are lots of reasons to be interested in DNA.
At Howard University Hospital in Washington, D.C., scientists have collected patient samples from their predominantly black patient populations for input into the National Human Genome Institute database. Their research will focus on diseases that primarily affect African Americans.
Physicians and scientists in Arizona have explored the genetic backgrounds of some Native Americans to determine their susceptibility to Type 2 diabetes. In the latter case, there have already been disputes about the methods of collection, the informed consent of participants and the sharing of data. These types of abuses are not uncharacteristic of the potential for ethical judgments to lag behind the scientific inquiry.
So when does race matter? It has certainly mattered for those African Americans whose race makes them the target population for the heart-disease drug BiDil. How black must one be to merit the drug? Consider this potential example. The publishing world is abuzz with the moving biography of Bliss Broyard's father. Anatole Broyard former New York Times book critic, hid his black ancestry until the end of his life. His daughter was raised to think of herself as white. Both she and her father could easily "pass" because their skin color did not betray their black ancestry. Should Bliss Broyard now be among those who get BiDil?
More broadly, what kinds of determinations do physicians make before they consider BiDil as a treatment option? If it will depend on a physician's judgment of phenotype (skin color), then we're back to a question as foolish as "Do you look black enough for a ‘black drug?'" And, by the way, which drug does Barack Obama get?
The importance given to "race" in the United States does not easily align with information on population markers that geneticists have discovered. But there seems to be little room for us to parse these significant differences.
The goal of genetic science is appropriately targeted toward medical decisions that are individual. A person's genetic makeup will one day lead to very specific, indeed individualized medical advice. But as long as we equate genetics and race, we bring along a set of biases that could disrupt this important medical objective and urge the shortcut of race as a stand-in for the scientific question. It's a slippery slope that could discourage our consideration of medically significant issues like nutrition, stress and lifestyle.
We know that race is deeply embedded with social significance. But when it comes to medicine and science, how easily can we displace socially learned constructions about race and ethnicity? Exactly what percentage of African ancestry must one have to merit a particular drug marketed to black folks? In the historic South, the "one-drop rule" determined your race in both social and legal matters. Just one drop of black blood in the family tree excluded you from claims to your white ancestry.
The days of "one drop" might not be as distant as we had imagined. Acknowledging the social biases inherent in our judgments about race is critical so that we don't do projects for "black Americans," but for people with a whole set of demographic similarities.