John Ruffin, former head of the National Institute of Minority Health and Health Disparities wrote:
"The 19th-century scientist and pathologist Rudolph Virchow gave voice to many of our present-day concerns about disparities and went a long way toward defining the task before us. A socially minded man, he believed that science should speak the language of the common people and that medicine should serve the public's health. He wrote, 'If medicine is to fulfill her greatest task, then she must enter the political and social life…'"
Do you agree and why? Is it permissible for scientists to become advocates in the areas of their research? What steps can one take to balance advocacy with the objectivity that is considered the ideal in scientific inquiry?
I agree with this statement because as scientists involved in human subjects research, we are most directly working with all aspects of the human condition and lived experience that is affecting our patients and thus the research we conduct. If there are disparities that are affecting patients in the specific area we are working, and those disparities have political and structural roots, then being oblivious to them does not ultimately help the patient population we are targeting with our research. As this class has shown, there is so much more that influences how disease and health manifest in a given patient, which often depend heavily on the structural and societal factors that our patients are affected by over their genetics or personal behaviors. While every scientific research endeavor we pursue will have its own unique way of being affected by these broader social and political factors, not at least having an understanding of these underlying influences will ultimately lead to disservices to our patients. I think that scientists should be advocates in their areas of research because they can offer very salient and relevant reasons why the research is important and is affecting patient’s lives. The balance between objectivity and advocacy comes when researchers focus on the need to pursue answering the important health questions as opposed to pushing solely their own research agenda (e.g. research into what causes poor glucose control in diabetes is crucial, but all the effort should be devoted to genetics research). Scientists also need to be aware of the impacts of their research to ensure it is not used for nefarious purposes by specific parties with their own interest.
Please describe an of controversy for health disparities research that you learned about in this course, or alternatively an area of research that should be prioritized in health disparities. Include why you find this area interesting or controversial.
I found the issue of targeting treatments to certain racial groups, such as in the BiDil example very troubling because it shows how a combination of good intentions, lack of understanding about race as a construct, and sound epidemiologic techniques resulted in the approval of an expensive drug that reinforced race as a biologic construct when the research did not show this. This is important for my area of sarcoidosis research since there are many health disparities that are seen in African Americans that have the potential for the same fate – findings in this disease could be thought to only apply to African American patients are differences seen by race could be ascribed to genetic/biologic differences as opposed to social ones. While there may be biologic factors that relate to ancestry that are relevant to this area, I am concerned that researchers in this field do not appreciate how race is a social construct and that differences by race have many other contributions that are socially and not biologically determined. Sarcoidosis research often does not receive enough research attention because it affects more African Americans and is often a chronic illness that can severely affect patients’ symptoms and less so than their lung function or other objective measures. As a researcher in this area, it is my job to ensure that the public, other health professionals, and policy makers are aware of these complicated factors so that the appropriate research can be done so that effective interventions at all levels (social and biologic) can be done.