Utah is a hub for genetic testing, but it needs to increase access for its racial minority residents. For genetic testing to flourish to its full potential, diversity must increase in testing databases. Historically, medical abuses like the Tuskegee Syphilis Study and mass sterilizations in the 1960s have caused distrust in marginalized populations. Many times, these underrepresented racial groups have lower health outcomes owing to historical racism, mistrust in the medical field, and current racism in practice.
In a paper addressing equitable precision genetics, American geneticist Muin J. Khoury emphasizes the role of genomics as a public health concern of utmost importance, with Black women with pathogenic BRCA variants far less likely to get risk-reducing mastectomies than their white counterparts. This might indicate that regardless of advances in genetics, perceptions might not be following suit.
Currently, genetic testing is expensive and not covered by many insurance providers, exacerbating already-existing health disparities in low-income minorities. A paradigm shift is necessary to address these gaps. Genetic testing should be a public service for those qualifying underrepresented groups as a means to increase database diversity and minority health outcomes. This would not only increase diversity in gene pools and genetic research but also shrink pre-existing health disparities in marginalized communities. Genetic testing should be accessible to all, and efforts should be made to make genetic counseling a more inclusive space for all.
Julane Machado, Salt Lake City