Leprosy has taken on many names throughout human history. But none of its nomenclature has adequately captured the essence of what it has historically meant to live with the disease like the Hawaiian term , or "the separating sickness." The appropriateness of this term is twofold: on the one hand, it accurately reflects the physical isolation imposed on leprosy patients as a result of stigmatization and quarantine policies; on the other, it seems fitting to use the language of the culture and race that leprosy so disproportionately affected in nineteenth and twentieth century Hawai`i. This essay offers an ethical analysis of the treatment of leprosy patients in Hawai`i to identify mistakes made in the sphere of public health to better guide the management of infectious diseases today. It provides an historical overview of leprosy in order to contextualize its journey to the Hawaiian Islands, with a particular focus on the horrific century-long isolation of leprosy patients to the remote Kalaupapa settlement. It then presents two contrasting normative claims about the banishment and isolation practices by using two different theories of justice: utilitarianism and Rawls' justice as fairness. In doing so, this essay illustrates the ways in which stigmatization and racism could likely affect the abhorrent treatment of leprosy patients by disproportionately appealing to the "greater good." However, I contend that this dichotomization of justice brings us to a moral impasse in the context of public health. Rather, considering infectious diseases with a "patient as victim and vector" (PVV) approach may prove more beneficial, especially in tandem with a schema of justice that promotes self-respect as a primary good to combat the deleterious effects of stigma. This historical reflection may thus allow medical professionals and policy makers alike to draw upon valuable ethical lessons for contemporary initiatives in public health.
BT - Asian bioethics review C1 - https://www.ncbi.nlm.nih.gov/pubmed/33717275 DA - 03/2018 DO - 10.1007/s41649-018-0042-3 IS - 1 J2 - Asian Bioeth Rev LA - eng N2 -Leprosy has taken on many names throughout human history. But none of its nomenclature has adequately captured the essence of what it has historically meant to live with the disease like the Hawaiian term , or "the separating sickness." The appropriateness of this term is twofold: on the one hand, it accurately reflects the physical isolation imposed on leprosy patients as a result of stigmatization and quarantine policies; on the other, it seems fitting to use the language of the culture and race that leprosy so disproportionately affected in nineteenth and twentieth century Hawai`i. This essay offers an ethical analysis of the treatment of leprosy patients in Hawai`i to identify mistakes made in the sphere of public health to better guide the management of infectious diseases today. It provides an historical overview of leprosy in order to contextualize its journey to the Hawaiian Islands, with a particular focus on the horrific century-long isolation of leprosy patients to the remote Kalaupapa settlement. It then presents two contrasting normative claims about the banishment and isolation practices by using two different theories of justice: utilitarianism and Rawls' justice as fairness. In doing so, this essay illustrates the ways in which stigmatization and racism could likely affect the abhorrent treatment of leprosy patients by disproportionately appealing to the "greater good." However, I contend that this dichotomization of justice brings us to a moral impasse in the context of public health. Rather, considering infectious diseases with a "patient as victim and vector" (PVV) approach may prove more beneficial, especially in tandem with a schema of justice that promotes self-respect as a primary good to combat the deleterious effects of stigma. This historical reflection may thus allow medical professionals and policy makers alike to draw upon valuable ethical lessons for contemporary initiatives in public health.
PY - 2018 SP - 53 EP - 66 T2 - Asian bioethics review TI - How Stigma Distorts Justice: the Exile and Isolation of Leprosy Patients in Hawai`i. UR - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7745767/pdf/41649_2018_Article_42.pdf VL - 10 SN - 1793-9453 ER -