Literature DB >> 33717275

How Stigma Distorts Justice: the Exile and Isolation of Leprosy Patients in Hawai`i.

Alexander T M Cheung1.   

Abstract

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 ma`i ho`oka`awale, 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. © National University of Singapore and Springer Nature Singapore Pte Ltd. 2018.

Entities:  

Keywords:  Global bioethics; Hawai'i; Justice; Leprosy; Public health; Self-respect; Stigma

Year:  2018        PMID: 33717275      PMCID: PMC7745767          DOI: 10.1007/s41649-018-0042-3

Source DB:  PubMed          Journal:  Asian Bioeth Rev        ISSN: 1793-9453


  17 in total

1.  The clinician-investigator: unavoidable but manageable tension.

Authors:  Howard Brody; Franklin G Miller
Journal:  Kennedy Inst Ethics J       Date:  2003-12

2.  How infectious diseases got left out--and what this omission might have meant for bioethics.

Authors:  Leslie P Francis; Margaret P Battin; Jay A Jacobson; Charles B Smith; Jeffrey Botkin
Journal:  Bioethics       Date:  2005-08       Impact factor: 1.898

3.  The continuing tensions between individual rights and public health. Talking Point on public health versus civil liberties.

Authors:  Ronald Bayer
Journal:  EMBO Rep       Date:  2007-12       Impact factor: 8.807

4.  Leprosy in Hawaii; the end of an epidemic.

Authors:  R M Worth
Journal:  Int J Lepr Other Mycobact Dis       Date:  1996-12

5.  From isolation to prosperity: Rediscovering the Carville Leprosarium.

Authors:  Natalie J Atkin
Journal:  Clin Dermatol       Date:  2017-12-01       Impact factor: 3.541

6.  The challenge of providing the public with actionable information during a pandemic.

Authors:  Leslie E Gerwin
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

7.  Massive gene decay in the leprosy bacillus.

Authors:  S T Cole; K Eiglmeier; J Parkhill; K D James; N R Thomson; P R Wheeler; N Honoré; T Garnier; C Churcher; D Harris; K Mungall; D Basham; D Brown; T Chillingworth; R Connor; R M Davies; K Devlin; S Duthoy; T Feltwell; A Fraser; N Hamlin; S Holroyd; T Hornsby; K Jagels; C Lacroix; J Maclean; S Moule; L Murphy; K Oliver; M A Quail; M A Rajandream; K M Rutherford; S Rutter; K Seeger; S Simon; M Simmonds; J Skelton; R Squares; S Squares; K Stevens; K Taylor; S Whitehead; J R Woodward; B G Barrell
Journal:  Nature       Date:  2001-02-22       Impact factor: 49.962

Review 8.  Update on the epidemiology, diagnosis, and treatment of leprosy.

Authors:  F Reibel; E Cambau; A Aubry
Journal:  Med Mal Infect       Date:  2015-10-01       Impact factor: 2.152

9.  Psychiatry during the Nazi era: ethical lessons for the modern professional.

Authors:  Rael D Strous
Journal:  Ann Gen Psychiatry       Date:  2007-02-27       Impact factor: 3.455

10.  The nature of biblical "leprosy" and the use of alternative medical terms in modern translations of the Bible'.

Authors:  E V Hulse
Journal:  Med Hist       Date:  1976-04       Impact factor: 1.419

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