In chapter 8, “Constraints on Free Inquiry,” Kitcher discusses the problems with unrestrained free inquiry in scientific practice. He demonstrates that even a Millian framework, with individual freedom of expression as one of its basic tenets, rejects absolutely free inquiry when there is ample evidence to believe that it would undermine the fundamental freedoms of other individuals or groups (Kitcher, Science, Truth and Democracy, p. 95). He articulates the risks of the political and epistemic asymmetries associated with pursuing such types of inquiry, and he concludes that “if we shouldn’t engage in ventures that can be expected to decrease the well-being of those who are already worse off than other members of society, we should therefore refrain from engaging in [that particular area of science]” (98). However, he argues that prohibiting certain areas of research is the last thing we should do, as prohibition may have equally bad consequences as pursuing the work. Clearly there are still moral consequences of the research, so the onus is on individual scientists and scientific communities to decide which types of research to engage in. This brings our focus once again on the intent of the scientists.
The current use of race in genetics and genomics research sheds light on this issue. It’s no secret that race has been used as an important factor in biomedical research for decades; since the early 1990s, the NIH has required that women, children, and racial minorities be included in NIH-funded clinical trials when possible. The likely justification for this is to encourage equal representation of various members of society, but this could be extended further as a means of promoting social justice by providing “compensatory care” for historically underprivileged racial groups. This provides an interesting parallel to Kitcher’s discussion—it certainly makes sense to avoid those types of research which may result in political/epistemic asymmetry and social inequality, but should we pursue research that aims to benefit disadvantaged racial groups? Or instead, in using race in biomedical research (particularly genomics and pharmacogenomics), are we merely reinforcing the unfounded view that there are biologically meaningful links between race and health disparities?
I think the deeper problem lies in how we interpret and legitimize the use of race in biomedical research. What is race, anyway? Is it anything more than what the U.S. Census Bureau has decided to call “Caucasian” or “African-American” or “Pacific Islander”? What about mixed-race individuals? Are we so deluded by sociopolitical conceptions of race that we can’t even fathom it may all be an illusion? Research is increasingly demonstrating that there may be more variation within “racial” groups than between them, so why do we continue to use this as a scientifically sound variable?
Once again, it’s important to scrutinize the intent of the scientists. Did the developers of BiDil, the FDA-approved anti-hypertension drug targeted specifically for “self-identified blacks,” decide to market the drug to increase social justice, or was profit their only aim? (It’s worth noting that the drug’s elevated efficacy in black patients was demonstrated ex post facto.) If the drug had been found to be more efficacious in whites, would it still have been marketed? The main problem seems to be that we’ve taken a commonly held notion of race for granted and applied it scientifically, failing to acknowledge very important biases that are probably preventing us from getting at explanations closer to the truth. Even when racial stratification is used to promote equality, it seems we’re only watering the seeds of racism inherent in the social climate.
I’ve asked many questions and supplied few answers, and there remain many other pertinent issues of using race in biomedical research. I think what this dilemma demonstrates, in the context of our current discussion, is that free inquiry always has potential (and often foreseeable) moral and social consequences. Whether we perceive those consequences to be good or bad, we must remember to analyze intentions of the responsible parties to discover biases that may be preventing us from conducting well-ordered science. That’s all for now. (If you’re interested in race issues and social justice in pharmacogenomics, I recommend reading Sandra Soo-Jin Lee; she’s done excellent work in this area.)