August 25, 2012 | 11
Race is everywhere in medicine. Most health statistics are broken down by race. We routinely characterize diseases by which populations they affect more and less and medications by which ethnicities respond better or worse.
It’s so ubiquitous that it’s easy to take for granted as justified. But the use of race in medicine is a subject that is vigorously debated. Whenever a new study comes out stratifying results by race, there are inevitably supporters and critics.
The question under debate: is there a place for race in medicine?
There’s a growing number who say we should toss this way of thinking entirely. Many scholars now contend that race is closer to a social construct than a biological category, and there’s the legitimate fear that pointing out differences between races sends the message that the difference is biological. Even if there are certain genetic differences among populations, we know that self-reported race is at best a crude proxy for indicating them. Moreover, studies often do not adjust for all other variables besides genetics, such as socioeconomic status, culture, and discrimination – meaning if differences are shown, the knee-jerk tendency to think biology might overshadow important environmental disparities that deserve our attention. There are social concerns too, in that historically ethnicity in research has been abused by pseudoscientists with racist agendas of demonstrating the superiority of certain people over others. In light of that history, profound sensitivity toward using race as a variable in medicine is understandable and warranted.
Part of the problem may be that some simply do not give it enough thought. There are some who stratify any data they collect on any health-related subject by race because that’s what others did before them, along with others before that. But when you do any data analysis, you need to justify its being done. There’s no such thing as just “laying out the facts” because there is no such thing as a predetermined set of facts that we either expose or hide. We make choices with everything. Collecting, breaking down, and representing data all involve choices. When comparing groups, we can draw the lines wherever we want. Telling of this point is that many studies that talk about race still only compare blacks to whites, ignoring all other groups along with cases of mixed ancestry.
When the choice lies with the researcher, she has an obligation to use it responsibly. As such, it’s not enough to enough to justify a project with some ambiguous version of: “this will contribute to the literature by showing something we do not know.” We don’t know infinite numbers of things. Research has to have value. At the forefront of every decision should be the questions: What’s the point? Are the differences I’m trying to show relevant to anything? Are there implications for disease prevention, diagnosis, management, or treatment?
Sometimes, indeed the answer is yes. There have been cases where thinking about race, even as a rough guide, have led to benefits for patients. Knowing that sickle cell anemia is more prevalent among populations of sub-Saharan African ancestry can tip physicians off for earlier and thereby more effective diagnosis and management. Since Tay-Sachs is a genetic disease with increased prevalence among Ashkenazi Jews, Jewish communities early on welcomed genetic testing for prospective parents and by doing so dramatically reduced the incidence of the disease. Individuals of Asian descent are more likely to carry certain genetic polymorphisms resulting in slower drug metabolism – meaning patients need lower doses to achieve the desired effects and avoid toxicity. There are many more examples. While it is such an important point that I’ll say it again – that race is only a very imperfect proxy for genetics – there has been demonstrated medical value in being aware of these trends.
The reason is that medicine is a field that uses heuristics – simple “rules of thumb” that help home in on best guesses when comprehensive searches are not feasible. These shortcuts are so frequently employed because medicine is the perfect storm of information overload combined with limited time. Best guesses in medicine are probabilistic; doctors collect clues from various sources to select more likely and less likely options. Every test, every new piece of information contributes to that ranking. Thus, some argue that just as doctors clue into best guesses based on a patient’s constellation of symptoms and test results, so too can race be used as an approximate guide. With the recognition that heuristics can lead to biases, the solution is not to discard them but rather to make doctors more cognizant of biases so they can work to eliminate them and use heuristics more effectively.
The use of race in medicine is a deeply sensitive issue and should be treated as such. One thing to note is that in contrast to shameful periods in history that focused on race with unethical agendas, the vast majority of current research is completely well-intentioned, toward the goal of optimally tailoring medical care to a diverse patient population. Those on both extremes of the debate are looking out for patients. So where does that leave us? While there is a place for race in medicine, the literature also remains rife with studies with seem to point out differences with no valid reason for pointing out differences, and my sense is that there’s a greater tendency to overuse race when it’s not appropriate than to neglect it when it is. The burden should be on every medical researcher who wants to talk about race to be explicit as to what contribution this data would make to the world. And, if those measures fail, it would behoove readers and patients to apply just as critical an eye.