Society for Medical Anthropology
Oral Presentation Session
ALS (amyotrophic lateral sclerosis) presents a unique set of biomedical, social, and clinical research challenges, given that the condition has no known etiology or cure. Since its recognition as a condition, ALS has been publicly connected to famous elite white men like – baseball player Lou Gehrig, author Morrie Schwartz, and physicist Stephen Hawking. According to the ALS Association’s website 93% of patients in their CARE database are white. Yet, the same webpage also indicates that ALS can affect anyone regardless of race/ethnicity. In the past few decades, ALS research has focused almost entirely on genetic research (i.e., SOD1, C9ORF72 genes). 5-10% of ALS cases are due to a genetic mutation inherited from a family member. The majority of the individuals with mutated causative genes are white. However, 90% of ALS cases are “sporadic” and have no answers about their disease etiology. Despite the fact that most cases of ALS are not hereditary, ALS researchers still overwhelmingly focus on genetic causes. At one my fieldsites, 20 out of 28 research studies concentrate their efforts on genome sequencing; the other 8 studies are drug trials or retrospective chart reviews.
Based on my fieldwork with physician-scientists and researchers focused on ALS, I argue that epistemological biases in scientific research coupled with biases in public awareness systems lead to inadequate consideration of who can contract certain diseases. Biases in the ALS community are written off as further “unknowns” of the disease pathology and etiology rather than opportunities for scientific exploration into the unknown.