Repurposing a rare opportunity: a brief insight into how implicit bias towards biomedicine impacts the care received by patients with a rare illness

Orphanet Journal of Rare Diseases
Logan Zane John Williams

Abstract

Medical students automatically couple rare illnesses with biomedical minutiae. Upon meeting CS (pseudonym), a 5-year-old boy with Worster Drought Syndrome, I became inadvertently caught in the trap of focusing on his diagnosis rather than CS as a patient. I fumbled around CS's past medical history by fervently asking about all the different types of seizures he was plagued by. It was only after CS's mother, TS (pseudonym), volunteered the psychosocial challenges she faced caring for CS that I realised the strong implicit bias I had towards biomedical aspects of patient care. I discovered that TS was robbed of being able to celebrate CS's developmental milestones, as they posed unique challenges with very serious risks. Having learned the extent of such psychosocial challenges, I searched to understand the origin of biases towards biomedicine, within myself and within the medical system. I attribute my own biases in part to the current state of medical education, which disproportionately focuses on the scientific, rather than psychosocial and humanistic factors. Systemically, there is a large commercial driving force behind scientific research into rare illnesses. The interest in rare illnesses displayed by pharmaceutical indust...Continue Reading

References

Jun 23, 2006·Journal of Internal Medicine·M WästfeltJ-I Henter
Jun 17, 2008·Lancet·Arrigo SchieppatiAnita Aperia
Jan 10, 2009·BMC Medical Education·Andrew B SymonsElie A Akl
Apr 19, 2015·Orphanet Journal of Rare Diseases·Ségolène AyméAna Rath
Oct 22, 2017·Drug Discovery Today·Brian DelavanZhichao Liu

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Citations

Jun 15, 2021·Frontiers in Genetics·Jan Domaradzki, Dariusz Walkowiak

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