Tuesday, March 24

Race, Social Justice, & Free Inquiry

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.)


  1. It seems what is important in defining race to biomedical researchers is different to how we sociopolitically define race. The sociopolitical definition seems more related to geographic origin and shared superficial traits. The biomedical importance of race is shared environmental circumstances which essentially act as genetic filters enhancing the fitness of some genes, while decreasing the fitness of others. For example, the high death toll of the black plague as thought to have left many of the surviving residents of Europe with CCR5-delta32; which on a side note it might provide some natural immunity to HIV. Secondly, higher than average rates of sickle cell anemia in Africans is likely related to it providing some immunity to malaria (Fukuyama).

    I haven’t read the BiDil literature but I’m guessing that there are “self-identified blacks” for which it works no better than for whites because they don’t share certain genetic traits. If the emphasis is placed on shared heritable of traits, and not the sociopolitical definition, it would be a more honest representation to consumers. BiDil users for instance, would know that the enhanced efficacy is valid in a statistical sense, but it might or might not work better for them.

    On the surface I don’t think there should be anything wrong to tailoring drugs to particular groups or individuals because of the potential for greater efficacy with fewer side effects. As you pointed out the problem is with partiality and sparking social fires. Marketing them as “compensatory care” might not be the best tact to take. But, if we get to the point where you could go to the doctor have your genome sequenced and then have pharmaceuticals specifically designed to your particular biochemistry I certainly wouldn't complain.

  2. I agree and I think that at one time, prior to globalization and intermingling of geographically isolated populations, race was a very good indicator of important biological characteristics. I acknowledge also that there are indeed useful biological categories of race that may prove very important in biomedical research. The problem for me is that the line separating biological race and sociopolitical race is becoming blurred, and even though the two categories may be quite different, it's difficult to convey that nuance to a lay public. I worry also about the intent of the scientist and how they manage racial data and market products to specific groups. I agree that genomic medicine is a desirable goal, but it may be a rocky road if we fail to seriously consider the meaning of using race in research.

  3. I agree that there needs to be a distinction made between the biological/biomedical research use of race and sociopolitical use of race. However, I don't think that there every has been a definite line made between the two. I think that it is the other way around--only in the past 10 years or so have we as a society begun to separate the two.

    If you think about it, much research (take the Tuskegee experiment) that was done in the mid 1900s on people of other races/backgrounds was done to benefit White America. Either to demonstrate that individuals who were not White were indeed different, and perhaps inferior, or to use them as "guinea pigs". Which I would have to agree with Roxy, was mostly like due to the intentions of the scientists carrying out the experiments.

    I do think that these type of intentions still exist among some scientists, but that most of the research that is done in regards to race is not pursued with these intentions. Instead I think that, like Roger began to touch on, such research is due to the movement of personalized medicine. Through research it has been found that individuals who are African Americans have a higher probability of certain cancers or dieing from heart disease. Also that Caucasians have a higher probability for certain genetic conditions (like Cystic Fibrosis). In result such research is starting to make a distinction between biological/biomedical race and sociopolitical race.

    In the end what I am saying is that some of the research that has been done has revealed important and relevant information. However, when such projects are to be done and are carried out, the intentions for the project need to be clear stated by the scientists. Specifically, if different races are to be used in a study, it needs to be clear that the reasoning is for a biological/biomedical reasoning (for more personalized medicine)--this is what I think some current research regarding conditions/drugs/etc do not clearly do.


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