||AN ETHICAL ANALYSIS OF LEPROSY CONTROL POLICY IN JAPAN
School of Health Sciences, Faculty of Medicine, Niigata University
Notice: This manuscript was revised and published as an article on the official journal of Asian Bioethics Association, which can be downloaded at the journal site. Please find Michio Miyasaka: Punishing Paternalism: An Ethical Analysis of Japan's Leprosy Control Policy, Eubios Journal of Asian and International Bioethics, 19 (4), 103-107, 2009.
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.
Leprosy , or Hansen's disease, is a chronic infectious disease caused by Mycobacterium leprae, which mainly affects peripheral nerves, skin, eyes, and nasal mucosa. Leprosy is rarely fatal but can deform and disable untreated patients permanently. Lesions and nodules may appear on the skin, and damaged limb nerves may cause fingers and toes to stiffen and curl inward. The disease also can make some patients blind. On the other hand, the bacillus multiplies very slowly and the symptoms can take 20 years to appear. It is not highly infectious and only 5% of those exposed acquire the disease. The risk groups today are limited to those who have close contacts with patients who have untreated, active, multibacillary disease. After Promin, a sulfone drug, was found effective in 1940s, leprosy became a curable disease. World Health Organization (WHO) has recommended the multidrug therapy as a safe and effective treatment since1981.
Leprosy has been associated with deep stigma, which dates back to the ancient history. In many parts of the world, leprosy patients were ostracized by their communities and families, based on religious or popular beliefs, which often described leprosy as a result of sins or wrongdoings. A skin disease suggestive of leprosy was described as a divine punishment for immorality in the Old Testament. In the medieval Europe, Christian priests imitated to bury patients in graves before sending them to leprosaria, and hundreds of leprosy patients were slaughtered, because some of them were rumored to have poisoned wells and fountains. In Japan, there was a Buddhism-rooted belief, which explained leprosy as an outcome of wrongdoings of his or her previous lives. Japanese folklores told leprosy patients were casted away in valleys or mountains.
These tragedies sound like foregone stories that happened long before bioethics or patient's rights were established. However, the leprosy control policy in Japan exemplifies the disease has evoked serious ethical questions in the context of modern medicine.
LEPROSY CONTROL POLICY IN JAPAN
Leprosy control policy in Japan started during its rapid modernization since it opened ports and started to introduce Western socio-legal system and medicine in late 19th century. Leprosy patients of the day gathered and formed colonies around shrines, temples, and hot springs. Some Westerners observed them leading miserable street life as outcasts or beggars, and some missionaries established private leprosarium. In 1889, French Catholic missionary Testevuide opened the first private leprosarium Koyama Fukusei Hospital in Sizuoka , and the establishment of private leprosaria were followed by several foreign missionaries. Their activity were welcomed by patients, but at the same time stimulated the sense of rivalry of Japanese leaders who wished to make Japan "a first-class nation" with modernized public health system. Historian Yuyaka Fujino pointed out that the intensive isolation of patients was motivated by Japanese leaders' recognition of leprosy patients on the street as "nation's shame".
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.
The first International Leprosy Conference was held in Berlin in 1897, in which two Japanese physicians participated. The conference acknowledged leprosy as a contagion caused by Mycobacterium leprae described by a Norwegian physician Armauer Hansen in 1873. There were differing views about the containment of leprosy by isolation among the attendants, but the conference concluded that patient isolation is necessary as one of strategies to control the disease. The conclusion inspired Japanese leaders and physicians to support patient isolation. Japanese Ministry of Interior Issues conducted a national survey in 1900 and reported 30,359 leprosy patients. In 1907, Leprosy Prevention Law (LPL) was enacted, under which physicians are obliged to report leprosy patients they found, and empowered political officers to order them to be admitted to leprosaria. In 1909, five public leprosaria opened in Aomori, Tokyo, Osaka, Kagawa, and Kumamoto, which were later extended as 13 national leprosaria covering most part of the country (Fig.1). Japanese government also built leprosaria in Korea and Taiwan during colonization.
During the 20th century, the enforced isolation of leprosy patients had gradually been understood differently by international and Japanese health care professionals. The International Leprosy Association (ILA) increasingly emphasized voluntary and limited isolation. After sulfone drugs were found effective in 1940s and their usage was improved in 1950s and 1960s, ILA and other international medical communities came to recommend that enforced isolation should be avoided as far as possible.
In Japan, on the other hand, leprologists remained to believe patient isolation is effective and necessary. Furthermore, they repeatedly claimed to expand the capacity of leprosaria and to effectuate more intensive isolation. In 1935, Government adopted a program to eradicate leprosy in 20 years, and local governments launched a nationwide campaign named muraiken undou (literally, "no leprosy prefecture campaign") in 1938, through which they encouraged local residents to identify leprosy patients in their neighborhood and inform officials to send them to leprosaria. There was only minor argument among Japanese leprologists that enforced isolation is not necessary. Leprologist Noboru Ogasawara of Kyoto University insisted that the disease was not incurable, not inheritable, and not highly contagious in 1931, but his claim was ignored and attacked by other leprologists. The criticism was often sharpened in the pre-WWII tendencies toward fascism.
After WWII, however, the enforced isolation policy survived the post-war reform under US occupation in which Japanese society was drastically democratized. New Constitution declared fundamental human rights for all nationals, including the freedom of political activity. In 1951, National Leprosaria Patients' Association was established and demanded to abolish enforced isolation. However, leprologists insisted to maintain and accomplish it. In the same year, three representative directors of leprosaria, Kensuke Mitsuda, Yoshinobu Hayashi, and Matsuki Miyazaki required the Diet to maintain and reinforce isolation policy. The revision of LPL in 1953 followed the leprologists' requirement: it remained stipulating compulsory isolation, prohibition of leave without permission, and punishment of disobedient patients. As the law defined no discharge codes, patients had to be isolated for a lifetime. Meanwhile, the nationwide campaign muraiken undou had resulted in almost perfect isolation. The number of those hospitalized in leprosaria reached 11,057 in 1955, which was estimated at 91 % of all patients in the country . Therefore, in 1950s, almost all leprosy patients in Japan had been isolated in leprosaria, and destined to live out their life there even after they were treated with sulfone drugs and proven not to have bacilli.
The notion that leprosy patients should be prevented from having children had been accepted by not only Japanese leprologists but by foreign missionaries involved in the care of leprosy patients. However, they considered very different approaches. Hanna Riddell, an English missionary who opened a private leprosarium Kaishun Hospital in Kumamoto, insisted sex segregation, an idea to hospitalize female and male patients separately. However, leprologist Kensuke Mitsuda argued against her approach pointing out that sex segregation was unrealistic. He wrote, "It will be natural for desperate persons to live only for the pleasure of the moment. But the pleasure they could obtain in leprosaria is no more than gambling or adultery. ... Here emerged a moral anarchism which resulted in more than a dozen of babies that should not have been born". Mitsuda concluded that sex segregation was impracticable in national leprosaria, and that sterilization of patients was more realistic and contribute patient's welfare by permitting them to marry. Furthermore, he believed that sterilization would contribute to patient's welfare and to leprosaria's peace, because physicians could allow patients to marry without letting them to have children.
Mitsuda began to vasectomize male patients who wished to cohabit with female patients in 1915. In the book he published in 1950, Mitsuda wrote the first vasectomy was performed with a voluntary patient, but many patients later blamed that sterilization was conducted against their wishes and that it impaired their dignity severely. Furthermore, pregnant female patients were often forced to have abortions. Former patient Shige Tamaki described regretfully her abortion. When she was found to be seven-month pregnant, leprosarium officers scolded her and strongly suggested to undergo abortion. According to Tamaki, it was a painful experience to describe. She was then seven months pregnant, and it was a female ophthalmologist who performed the abortion --- or an infanticide. She clearly remembers the infant waving hands and legs on a surgical plate, a nurse covered the nose and the mouth of the infant with a piece of gauze to terminate its breathing, saying to Tamaki "it is a cute girl, and looks very much like you."
During Japanese colonization of the Korean peninsula, officials of Shorokuto Kousei-en, a Japanese-run leprosarium on Sorokdo Island near the Korean peninsula's southwestern tip, committed patient's sterilization as a punishment. A Korean former patient testified in a lawsuit against Japanese government in 2004, that he was vasectomize when he refused to worship a Japanese Shinto shrine in the leprosarium. He was placed in the confinement room, and forced to undergo sterilization without any explanation why he must undergo it.
The vasectomy and abortion of leprosy patients had been conducted with out legal base, but both were legalized by the Eugenic Law (Yusei Hogo Hou) enacted in 1948.
Former patients have claimed that the living condition in national leprosaria was far from that appropriate to patients of the disease. They were assigned many kind of labors to make their lives livable. Mitsuda wrote in 1950 as follows.
I thought it was the securest for lepers to be treated in quarantines. I saw many patients who looked almost cured, but took a turn for the worse after leaving leprosaria and kept inordinate hours. We should try to keep them in leprosaria and give them appropriate reciprocal jobs. That is why I have encouraged patients in mutual aid, such as care for those with advanced symptoms and services to promote the welfare of leprosaria.
However, patients had no way to refuse them, because national leprosaria had been understaffed and their management had been dependent on patient's low-wage labors. Patients in milder conditions were assigned heavy labors; they had to nurse invalid patients, bury dead patients, wash bandages and gauzes for reuse, collect night soil, repair buildings and roads. During WWII patients of Kuryu Rakusen-en, a national leprosarium in Gumma located on a hillside with an altitude of 1,200 meters, were ordered to walk down to market places about 10 kilometers (6.3 miles) away to buy charcoals and firewoods to save gasoline. They had to walk on the mountain trails back to the leprosarium carrying heavy bunches of charcoals and firewoods (Photo 1). Patients of leprosaria in northern part of Japan were assigned to clear the snow from the roof in winter (Photo 2). Leprologist Shinzo Izumi gave testimony in the court that in his experience as leprologist in developing countries he had seldom seen leprosy patients disabled and disfigured so severely as in Japan. It is presumed that heavy labors may have exacerbated their conditions, because the disease makes victims' impassive to wounds and pains. Former patient Yuji Kodama of Kuryu Rakusen-en told that when he and other patients were gathering firewood in a steep valley, he saw bunches of firewoods passed from one patient to another were stained with their blood.
Leprosy patients in Japan sometimes felt themselves dealt with like prisoners rather than patients. National leprosaria were built in remote areas or in islands, and were surrounded by cliffs, forests, sea, and high walls (photo3). When they travelled to leprosaria, they often left home at midnight not to be noticed by neighbors, because they had to defend their family members from discriminatory responses in their communities. In fact, once people identified a "lepers' family", children from it were ill treated by friends at school, and women from it were often divorced, although they were not infected with the disease. Patients brought together from a region were usually transferred to leprosaria in a special train which patients ironically called "omeshi ressha" (a train for Japanese Emperor). When patients refused to be institutionalized, or escaped from leprosaria, the police picked them up and transfer them to the leprosaria again.
However, physicians in leprosaria thought that the police power should be applied more directly in leprosaria, and that "leper's prison" should be established. Kensuke Mitsuda wrote some patients committed assault and battery, theft, adultery, and riot, but directors had not been authorized to arrest or punish them, therefore there was no ways to control disorders in leprosaria. Furthermore, he insisted that if a leprosy patient committed crime and was arrested out of leprosaria, he or she would be sent not a prison but to a leprosarium, because prisons would not accept leprosy patients.
The "leper's prison" did not realize until 1953 (mostly for financial reasons), but in 1916 the government accepted their claim for the police power by revising LPL in which leprosarium directors were empowered to arrest and punish disobedient patients. Accordingly, confinement facilities were built in all national leprosaria. The director could order to imprison patients up to one month, and reduce their meals to twice a day without court order.
These punishments were questionable considering that they were patients vulnerable to poor living conditions or undernutrition, and that the Constitution of Japan had stipulated the right of access to the courts. However, leprologists of the day regarded the confinement as nothing but a mild "house arrest" which "seldom had effect on brutal ones who could repeat crimes". Directors of national leprosaria decided to build a special facility in which they could give more severe punishment. The special facility was constructed in Kuryu Rakusen-en in 1938. It was officially named tokubetsu byoshitsu ("Special Sickroom"), but was called Jukambo ("maximum confinement facility") by patients. In fact, it was a place of deadly confinement composed of 8 cells (Fig.2). Mitsuda wrote "Special Sickroom made leprosarium's atmosphere unclouded and guileless", because they could "imprison those who repeatedly escaped from leprosaria, especially those who harmed patient's peace from all over the country".
However, post-WWII investigation of Jukambo unveiled one of the darkest aspects of Japanese leprosy control policy. It was recorded that 22 of 92 persons imprisoned died during their imprisonment or within a few months after their disimprisonment. The cause of victims' death (i.e. debility, pneumonia, nephritis, and suicide) suggested destructive conditions inside Jukambo. The date of their death in Jukambo showed a concentration between November and March, in which air temperature of the region dropped to -16℃ (-3.2 �) or below. The reason why prisoner's death often occurred in winter can be found in the architectural structure of the building. Each cell in Jukambo had no heating apparatus, and the building was on low foundations probably to prevent confinees from escaping from the floor. Behind walls of each cell were roofless gaps separating each cell, and the snow lay on the ground in winter. Therefore, during winter the cells were refrigerated from walls and floors. Furthermore, confinees were usually imprisoned much longer than the ordained period. Average length of confinement was more than 130 days. The longest imprisonment was over 500 days.
The case of Michita Yamai illustrates how the confinement was left to leprosarium staff's discretion . Yamai was a patient at Tama Zensho-en, a national leprosarium in Tokyo, where he was assigned a job at a laundry. One day he requested leprosaria officials to renew their worn-out rubber boots, because the boots let in water and harmed patients' foot. After his request was rejected, patients stopped to work in the laundry. Yamai was then sent to Jukambo, with the reason that he incited the strike. When his wife complained of the decision, the officials of Zensho-en sent her also to Jukambo. Mr. Yamai fell into a critical condition in 44 days of the confinement in Jukambo, and died in 45 days after discharge. Mrs. Yamai attempted suicide in Jukambo by hitting her head against the wall of the cell.
Jukambo terrified leprosy patients nationwide who called it satsujin gokusha ("murdering prison") or "Japanese Auschwitz". In 1947, media coverage made Jukambo a scandal and officials of Ministry of Health and Welfare (MHW) commented at the Diet that they would abolish it. However, the power given to leprosarium directors to arrest and punish patients remained effective, and the "leper's prison" was established in Kikuchi Keifu-en, a national leprosarium in Kumamoto in 1953.
END OF THE POLICY
Japanese leprosy control policy remained quite a long time. It survived 1950s when post-WWII reform democratized Japanese socio-legal system; 1960s when sulfone drugs became widely available and studies showed the disease was rarely contagious ; and 1970s and 1980s when Japanese scholars introduced bioethics and its concepts (i.e. patient's right, informed consent). The crucial moment of its end came as late as in 1990s, when all residents in leprosaria had become "former patients" who were bacteriologically negative, and had spent most of their lifetime.
Patient's rights movement
It should be noted that patient's activity to abolish the control policy started early. Since 1920s, Patient's Association (jichikai) was organized in each leprosarium to improve their living conditions of leprosaria. Their activity was suppressed during the wartime, and terrorized by the arbitrary punishment, especially the confinement into Jukambo. Former patient Goro Sawada described, ﾒﾉthe presence of this Special Sickroom (Jukambo) weighed heavily on the residentﾕs mind. Even when we experience something unforgivable, ﾉ the Special Sickroom always came up to our mind, and made us hesitate to resist it.ﾓ However, the suppressed energy burst out since the Constitution of Japan guaranteed fundamental human rights including freedom of assembly and speech, and the Jukambo was abolished. As mentioned above, National Leprosaria Patients' Association was established in 1951, and demanded to abolish the above-mentioned questionable powers. Some patients went on hunger strike at their leprosaria, and a few hundred went on a sit-down strike in front of the MHW and the Diet Building.
However, their movement confronted public ignorance. There had been rare media coverage about the patient's movement, and Japanese media generally appreciated the isolation policies until around 1980s. The intensive isolation and the lack of educational programs resulted public ignorance about the disease over generations. Not only young people but also elder people seldom knew about leprosy. There was a serious misunderstanding in the Japanese public that the disease is both contagious and inheritable. The misunderstanding could have been worsened and fixed by the legalization of leprosy patient's abortion by the Eugenic Law in 1948, which mainly targeted inheritable diseases.
Abolishment of LPL
On the other hand, at least in 1980s, patient's union and medical professions came to cooperate in changing the situation. Fujio Otani, a medical official of the Ministry of Health and Welfare (MHW), was regarded as one of key players in the partnership between medical professions and former patients . Former patients had been old, and many of them came to be afraid of being discharged enforcedly from leprosaria. Furthermore, because of the sterilization, they had no children who could support them when they went back to the society. In practice, the powers over patients given to medical professions were applied mildly. Former patients were almost free to leave their leprosaria, released from heavy labors (which had gradually been assigned to the leprosarium staff). Otani considered isolation no longer scientifically valid or ethically justifiable, but he had to consider former patients' anxiety for the future. He proposed to National Leprosaria Residents' Association (Patient's Association had been renamed as Residents' Association, based on the fact that most of inpatients were proven not to have bacilli) his opinion that LPL should be repealed and replaced by a new law to guarantee their livelihood and welfare. As they welcomed the suggestion, Otani proposed similar opinion at the 1994 meeting of Japanese Leprosy Association and at the 1995 Government-organized LPL Review Committee. According to the committeeﾕs report, the Diet passed the Act to Abolish the Leprosy Prevention Law.
Lawsuit against the country
In June of 1990, while the long-standing control policy was approaching its end, former patient Hiroshi Shima of Hoshizuka Keiai-en, a national leprosarium in Kagoshima, received a letter from Noriyasu Akase. He was known as the first plaintiff of the lawsuit against the country concerning the AIDS scandal. Akase and other hemophiliacs had been infected with HIV by HIV-contaminated blood products between 1983 and 1985, while Japanese government refused to allow the import of heat-treated safe blood products allegedly to give domestic drug companies time to develop their own versions. More than 1,800 Japanese hemophiliacs became infected with HIV, and more than 400 have died.
Akase wrote, "Why arenﾕt lepers angry?" He died in the next year, but the words remained stimulating Shima. Shima wrote, "his words occasionally came up to my mind and echoed the why not angry?" In 1995, four years after Akase's death, Shima decided to publish an essay titled "Housou no Sekinin" (the duty of the legal profession) and urged lawyers to support their forthcoming lawsuit against the country. Lawyers, however, had to begin with persuading other former patients to join the lawsuit. Most of them hesitated to join the lawsuit, because they considered themselves under the patronage of the country. The lawsuit was initially filed in July 1998 by only 13 residents from various leprosaria in which about 6000 former patients were living.
The result was a victory of former patients . On May 11 of 2001, the Kumamoto District Court declared that the isolation policy had violated the fundamental human rights in the Constitution of Japan. The court identified the isolation policy with an "absolute isolation" and "extinction" of leprosy patients. It held the MHW responsible for failing to seek an early reversal of the LPL, and the Diet responsible for inaction to repeal it, ordering compensation and apology by the government. It awarded plaintiffs US$65,000 to US$113,000 per person, which was far short of the US$930,000 demanded by the plaintiffs.
Responsibility of medical professions
The point at issue in Kumamoto judgement was the enforced isolation, which the court ruled out not justifiable after it became medically unnecessary at least since 1960s. Other three questionable aspects we have considered here (i.e. sterilization, enforced labor, and arbitrary punishment) 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.
However, the responsibility of medical professions for overall control policy was quite significant. As I have described in this paper, most aspects of the control policy were proposed by leading leprologists, and the policy can be considered as their strong paternalism materialized in many forms of extreme powers. While overwhelming power given to the physician, the patient had no choice other than to obey or to commit a hopeless resistance, at the risk of the severe punishment. While great number of patients or former patients died in leprosaria, leading leprologist Kensuke Mitsuda lived out his life in a glory. In 1951, he was awarded bunka kunsho, a decoration from the country for whom with excellent contribution to Japanese culture in the field of science and art. When he died in 1964, Asahi Shimbun, one of leading national newspapers, mourned for him as "Japanese Albert Schweitzer".
Mitsuda has long been admired as kyu-rai no chichi ("father of leper's rescue"). The term kyu-rai is confusing, because the two terms rai ("leprosy") had often been used to mean "leper". Muraiken-undo, for example, literally indicated "no-leprosy campaign, but in practice it was no more than a "no-lepers campaign" to sweep out leprosy patients from each prefecture. In the same manner, it is uncertain whether Mitsuda and other leprologists tried to rescue "lepers", or rescue uninfected people from "lepers".
This paper was supported by Grant-in-aids for Scientific Research (project number: 15652001) provided by Japan Society for the Promotion of Science. I am grateful to Kimiko Saito and Yuji Kodama for their permission of photographs in this paper.
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Michio Miyasaka,Ph.D. is associate professor of biomedical ethics at Niigata University Faculty of Medicine.