East Asia Disability Studies Forum (EADSF) 2023 Oct 27th, 28th(Fri, Sat) 2023, at E-room Center, Korea Disabled People and Medical Research in Japan in the 1960s. The Process of Establishing the "Kyoto Collection" SAKAI Megumi 1. Question: What is the background behind the collection of aborted fetuses? In Kyoto, there exists a collection of specimens of aborted fetuses called the "Kyoto Collection," comprising 45,373 specimens. These specimens were meticulously collected in the 1960s and 1970s under the Eugenic Protection Law. Currently, a database of specimens is being compiled and their images are used in fundamental human embryology texts. The Kyoto Collection was conceived and led by Nishimura Hideo (1912–1995), a physician and anatomist associated with Kyoto University. His research focused on "deformities" and congenital anomalies. To shed light on the manner in which these specimens were collected, this report aims to place the collection within a broader social context, with a particular emphasis on the confluence of medical research and the gaze of the disabled in 1960s Japan. 2. Japanese society and people with disabilities in the 1960s Universal health coverage was established in Japan in 1961. Subsequently, there was a notable increase in the use of pharmaceuticals, leading to a rapid expansion in pharmaceutical production. Thalidomide-related incidents also occurred during this period. Thalidomide drugs were sold in 46 countries around the world. It was discovered that thalidomide could cause the birth of handicapped babies if administered early in pregnancy. This tragic occurrence, often referred to as the "deformed baby fiasco," became a pressing social issue in Japan. In Belgium, a controversy erupted in 1962 when a mother who gave birth to a handicapped baby, her family, and a doctor were acquitted in a case of infanticide. A Japanese magazine held a debate titled "The Trial by Magazine: Should Deformed Babies Be Killed?" One of the debaters was the novelist Tsutomu Mizukami. Mizukami argued that the children with disabilities should be euthanised. In the early 1960s in Japan, there was an epidemic of polio which further fueled discussions on the euthanasia of children with disabilities. As Shinya Tateiwa notes, "There was a mood in Japan at the time to approve the killing of disabled people," and there was a fair and honest argument that disabled children should be euthanized. This atmosphere in Japan was characterized by a willingness to consider and even support the idea of ending the lives of people with disabilities. 3. Collecting Specimens 3-1. Enactment of Eugenic Protection Law and Increase in Abortions Following Japan's defeat in World War II, overpopulation became a pressing issue, and food shortages worsened. The Eugenic Protection Law was enacted in 1948. The background to this law was that abortion was rampant and many women died. One of the goals of the law was population control. Under this law, numerous sterilization procedures and abortions were performed. In the 1949 amendment to this law, "economic reasons" for abortion were recognized. The 1952 amendment allowed abortions to be performed only at the discretion of the designated physician. Since then, the number of abortions has increased in Japan. The number of abortions was 458,757 in 1951, 798,193 in 1952, and 1,068,066 in 1953, and continued to exceed 1 million cases until 1961. 3-2 What are the causes of congenital anomalies? In 1961, Nishimura initiated the collection of embryos as he believed that identifying the causes of congenital anomalies represented a lingering challenge in modern medicine. During this year, Nishimura commenced epidemiological studies on malformations in the uterine population, thereby beginning the collection of embryos and fetuses that had been miscarried or aborted. 3-3 The Relationship of Specimens to the Improvement of Abortion Techniques The background for the collection of embryos and fetuses was closely related to abortion and surgical techniques used in Japan at the time. Nishimura described the abortion situation before 1961 as follows: "Although such a situation seems to provide an exceptional opportunity to obtain a large number of human embryos, large-scale studies have not been immediately attempted. This was primarily because the operation was usually performed by dilatation and curettage, a procedure that severely damages the embryos in most cases. However, we noticed that there were some occasions when intact embryos were obtained from operations performed by skilled gynecologists." In other words, technical improvements in dilation and curettage no longer damaged the embryo. 4. From Specimen Collection and Medical Research In 1965, the number of collected specimens of embryos and fetuses had reached 2,200. In 1968, the number of undamaged embryos increased to 1,213. The Congenital Anomaly Specimen Analysis Center was established in 1975. Specimen collection and medical research have suggested that most abnormal embryos were lost spontaneously before birth. Nishimura published "Congenital Anomalies: Causes and Countermeasures" in 1966 and "Fetal Science" in 1976. In these works, he described individual measures to prevent congenital anomalies. Therefore, it is necessary to provide genetic counseling prior to marriage. It also recommends abortion based on prenatal diagnosis. Furthermore, as a social measure, he stated that the government should establish a congenital anomaly prevention association. Nishimura also suggested that the government should establish a system to monitor the occurrence of congenital anomalies, conduct follow-up surveys, and implement screening. 5. Future issues How were miscarried and aborted fetuses collected? First, the increase in the number of abortions owing to the Eugenic Protection Law and the resulting improvements in abortion techniques played a significant role. Second, there was a high level of interest in congenital abnormality research in the medical community, further accelerated by the thalidomide drug incident. It was under these circumstances that the collection of specimens proceeded. As a result, it was shown that congenital anomalies are often accidental and their causes are unknown. Nevertheless, this led to a discourse that entailed educational and behavioral restraints on pregnant and nursing mothers to prevent the birth of children with congenital abnormalities. This provides a medical rationale for reinforcing eugenic ideology. Importantly, this may have contributed to the emergence of a new form of eugenics, emphasizing spontaneity. In the future, we would like to examine the relationship between specimen collection and eugenics policy, and the actual impact of Nishimura's research on women.

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