The newest class of genetic counselors will have trained in arguably the most socially turbulent period of our lives. As public health decisions become increasingly politicized, mistrust of the medical system will have profound effects on the way we deliver care. What will these challenges look like? More practically, how are we preparing for them? Most students are introduced to classical origins of medical mistrust and are expected to recognize that medical mistrust is grounded in and rationalized by historical racial injustice. Public discourse during the pandemic has led me to question if this classical introduction succeeds in addressing our current state of affairs. While stories like Henrietta Lacks’ are of immense cultural importance, they tend to be overemphasized in discussions of medical mistrust in academic society. The danger of overemphasizing history is to attribute medical mistrust solely to events of the past. To put it bluntly, when I ask folks about their distrust of large medical institutions, they don’t often cite the Tuskegee syphilis study.
The distinctions between historical and modern biosocial perspectives on medical mistrust are recognized. American bioethicist Dorothy Roberts delineates the progression from the old biosocial thought to a new paradigm. Emerging research investigates how social environments produce biological outcomes, as opposed to the reverse. Yet still, we encounter studies attempting to provide deterministic biological explanations for social phenomena. Some epigenetics researchers are particularly guilty of applying old biosocial models to new research. More recently, genome-wide association study (GWAS) has gotten into the mix. The 2019 publication in Nature Communications titled “Genome-wide analysis identifies molecular systems and 149 genetic loci associated with income” by Hill et al. requires little clarification. The authors state that an understanding of the underlying causes of socioeconomically determined health can be helpful in minimizing social health disparities. To suggest, however, that identifying a genetic basis for income would be helpful in addressing such disparities is a leap of its own. The genetics community is far from being able to point the finger at history.
As new graduates, our unique social perspectives may impart a seemingly more chaotic position than before. The historical perspectives of mistrust effectively compartmentalize the issue of medical mistrust to one of race or culture. New frames of reference will fragment the historical perception, as was done with our previous understandings of genetics in society. Criticism of historical perspectives has led and will hopefully continue to lead the field of genetics toward a socially informed ethic. The new class of genetic counselors should understand that ethical thought is socially contextualized. Similarly, a genetic counselor’s psychosocial scope of practice is contextually defined. As social change continues to grip the nation, the genetic counseling community will be forced to criticize our own practices. Our history tells us that this is more of an opportunity than an insult.
Avi Anantharajah, BS is a second-year genetic counseling student at the University of Pennsylvania. His interests include the role of human behavior and psychology in medical decision-making.