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

摘要

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 industries only after the incentivisation by various countries highlight the socio-political constraints that bind research in this field. These biases, along with the marginalisation of patients and families with rare illnesses, means there is a very real risk that the goals of all stakeholders are incongruous. As such, it is imperative that we give these patients and families a voice.