Photo/Illutration A record of deceased residents kept at the National Sanatorium Nagashima-Aiseien for Hansen’s Disease in Setouchi, Okayama Prefecture, on April 25 (Hiroki Kitamura)

SETOUCHI, Okayama Prefecture—Reports uncovered at a sanitarium for leprosy patients here showed that their “consent” to be subject to autopsies were often posthumously given.

The in-house investigation at the National Sanatorium Nagashima-Aiseien in Setouchi city in Okayama Prefecture found such consent was provided “after death” in 39 cases, or 22.3 percent of the cases studied.

“It is possible that autopsy requests and consent were falsified by the doctors at the time,” said Noriyoshi Saito, director of Nagashima-Aiseien, who released the results of the investigation in the sanatorium’s journal.

To better understand leprosy, also known as Hansen’s disease, sanatoriums began conducting autopsies around 1920 at the latest.

Under the government’s policy of forcibly isolating leprosy patients, even after treatment methods became widespread shortly after World War II, almost all deceased leprosy patients were autopsied at more than half of the sanatoriums in Japan until around 1980.

Currently, there are 13 national sanatoriums in Japan.

Autopsies were said to have only been performed with the consent of the patient.

However, a final report of the health ministry’s leprosy issue verification council, which was released in 2005, stated that patients were forced to sign consent forms for autopsies when they entered the sanatorium.

The notion that “death automatically equals autopsy” became normalized.

The Nagashima-Aiseien sanatorium kept autopsy records on at least 1,834 deaths from 1931, the year after the sanatorium opened, until 1956.

From late 2023 to early 2024, the sanatorium examined the “autopsy requests”—consent forms for autopsies—for 175 cases from 1932, 1933, and part of the period from 1945 to 1948.

Checking these autopsy requests against death certificates and other documents revealed that some autopsies had been conducted without proper consent.

The consent form’s signature was dated after the person’s death in 39 cases examined.

The signature was dated on the same day as the death in 29 instances, or in 16.6 percent of the cases, and 7 to 1 days before death in 92 instances, or 52.6 percent.

In all 66 cases from 1946 to 1948, the consent form was signed and dated either on the day of death or after death.

In one case, consent was given on the day of death even though the person had died at 3:40 a.m.

In another case, consent was given two days before the resident died suddenly of cardiac paralysis.

Saito said the time to obtain consent for autopsies at Nagashima-Aiseien was just before the patient’s condition became critical.

“For residents who were trying to live as long as possible, (asking for autopsy consent) would have seemed like a death sentence. For this reason, the doctors may not have been able to bring it up,” Saito said.

Shinji Nakao, 90, president of the sanatorium’s residents’ community association, said, “I think autopsies have advanced medical care, but from today’s perspective, it was a practice that seems to have no human rights for the patients.”

Hirofumi Uchida, director of the National Hansen’s Disease Museum in western Tokyo, served as vice chair of the health ministry’s leprosy issue verification council.

“In sanatorium autopsies, every organ in the body was removed, even those unrelated to pathology, and the handling of the removed organs was sloppy,” he said. “Even after treatments were widely available, wide-scale autopsies continued for a long time.”

He said numerous residents were treated as research material, with no regard for their dignity.

“Although it was known that consent was coerced, the results of the Nagashima-Aiseien survey also suggest that inappropriate consent was formed without even confirming the patient’s intention,” he said.

Uchida added that the issues of forced sterilization and abortion should also be examined along with use of a drug called “koha,” which was still under development at the time.

The drug was administered to residents, even after it was suspected of causing deaths.

(This article was written by Hiroki Kitamura and Takuya Tanabe.)

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