Punishing paternalism: an ethical analysis of Japan's leprosy control policy

Leprosy (Hansen's disease) is a chronic infectious disease, which is rarely fatal but can deform and disable untreated patients permanently. The leprosy control policy in Japan exemplifies the disease has evoked ethical questions in the context of modern medicine. From ethical point of view, Japanese leprosy control policy can be interpreted as four powers given to the medical profession: (1) enforced isolation, (2) sterilization, (3) enforced labor, and (4) arbitrary punishment. Japanese leprologists believed enforced isolation necessary, even after sulfone drugs became widely available and international medical communities suggested enforced isolation should be abolished. Male patients who wished to marry must undergo vasectomy, and pregnant female patients were forced to have abortions. Patients in milder conditions were assigned heavy labors, which may have exacerbated their conditions. Leprosarium directors were empowered to arrest and punish disobedient patients without court order. It was recorded that 22 of 92 persons imprisoned in Jukambo, a special facility for severest punishment constructed in a leprosarium died of the confinement. In the landmark Kumamoto judgement in 2001, the court ruled out enforced isolation not justifiable after it became medically unnecessary at least since 1960s. However, other three questionable aspects were left unquestioned, though they would be much more difficult to justify. Furthermore, the lawsuit was filed against the country, and no individual responsible for the establishment and continuation of the policy was prosecuted. The responsibility of medical professions for overall control policy was quite significant.