Professors Goto and Matsubara are working on a project entitled “Historical Analysis of ELSI in Medicine and Healthcare based on the Construction of Archives,” which was selected by the Research Institute of Science and Technology for Society’s (RISTEX) Responsible Innovation with Conscience and Agility (RInCA) funding program. ELSI is often associated with the latest science and technology, so we asked Professor Goto why he has chosen to look to the past.

“My areas of expertise are medical sociology, history, and historical sociology, but I previously worked for a national healthcare think tank involved in the development of healthcare policy." Until then, I had thought that healthcare policy was something that was discussed based on the historical considerations of past health care systems, but in reality, this perspective was so rarely adopted that someone once asked me with a straight face, ‘What does history have to do with the present?’ On the other hand, when you look at the approaches taken by historical researchers, the fact of the matter is that they almost never consider how they can use their expertise to contribute to the world of today. Although history, the present, and the future are supposed to be connected in some way, this made me realize that there are actually great disconnects between them.

The call for proposals issued by RISTEX had a broad theme of how science and technology can be used for the benefit of society, so I saw this as an opportunity to tackle something that does not fit within the conventional framework of historical studies. In discussing with Professor Matsubara how I could use my research to contribute to society, I started to see what I should focus on, namely, how we can apply the perspective of ELSI to the history of medicine. When you stop and think about it, there are many issues in the history of psychiatric medicine, the field that I am mainly working on right now, that would fall under the concept of ELSI today, but ELSI is only applied to advanced science and technology. This made me scratch my head.”

Issues such as forced sterilization under the Eugenic Protection Act and prolonged psychiatric hospitalization, which are now considered prototypical issues for ELSI, existed in the medical science field, but have gone largely unrecognized. According to Professor Goto, his awareness of issues related to the history of healthcare systems and the problems inherent in ELSI itself are what led him to commence this project. But these were not the only problems.

“Looking at ELSI in advanced science and technology, especially in advanced medicine in North America, research styles are gradually changing to guarantee the civil rights of the parties involved. Citizen-participatory research has started to take off in Japan as well, and I have experienced firsthand the importance of engaging the parties involved in my own medical archive research. People who have provided me with materials have told me that they would like to see my research ‘give something back’ to the parties involved and that they want me to ‘listen to what the parties involved have to say’ when I use those materials in my research. This is because these materials could be misused by someone who has malicious intent toward the parties involved. Conducting research while engaging the parties involved reduces this kind of risk while allowing the researcher to feed the outcomes back to the parties involved, and of course, this provides the researchers with significant feedback as well. However, in historical research, there are very few studies that engage the parties involved, and no methodologies for this kind of research have been established yet. Rather, the prevailing view is that researchers should maintain a certain distance from the parties involved in order to maintain objectivity.

What’s more, there are challenges that arise when handling healthcare-related materials that could serve as evidence for such studies. Medical records and other documents created by medical institutions are important materials for verifying medical policies, but in Japan, after five years of storage, medical institutions are free to do what they want with them, including destroying them or continuing to store them. In fact, I once asked a medical institution if I could view and study their medical records as part of an official academic society project to investigate eugenic surgery, but this involved considerable difficulties. Given this state of affairs, we are far from realizing the systematic review of past health care policies. We need to create guidelines, with input from the parties involved and the public, to ensure that these materials can be used for research while protecting the privacy of individuals."

This project will promote ELSI research on past issues related to healthcare, and it will also collect actual documents related to past healthcare policies and compile methodologies, which itself will be a kind of research, while building an archive.

“In order to understand the structural transformation of healthcare, we must look at data that goes back 50 or even 100 years. For example, if you want to look up the number of psychiatric beds in Japan, you can easily find that information on the internet dating back to around the 1960s just after the war, but there is paper data that goes back 100 years or even further. We are currently in the process of collecting those materials and converting them into data."

The project team is considering archiving the collected materials in three main categories. First, statistical information that does not include personal information will be published on the website in order to make raw data available. The aim is to enable anyone, including researchers, policy makers, and the parties involved, to access, analyze, and use long-term medical data. Next, regarding official documents provided by archives with personal information redacted, the scope of disclosure online will need to be considered while interviewing the parties involved, and in principle, only researchers will be able to access these documents. Finally, valuable and important publications whose copyrights have expired will be made fully available to the public.

While conducting such archiving work, the project team will consider how materials should be handled while incorporating the opinions of the parties involved, and eventually they hope to compile guidelines and recommendations for the use of healthcare archives so that they can be used by medical institutions.

The handling of materials is not a straightforward issue. Professor Matsubara points out that the harder it is to access materials, the more likely they are tied to more serious problems.

“A great deal of information on local government policies and other such matters is open to the public, but policies related to mental illness and the Eugenic Protection Act have been implemented on the assumption that the relevant individuals will not openly disclose information. For example, in the case of eugenic surgery, there were national guidelines that indicated that those involved in the surgery were not allowed to say anything about it, and these even allowed medical institutions to falsely claim they only performed an appendectomy or other such surgery without informing the patient. This limits the amount of material that is available and makes it extremely difficult to verify data later on.

Naturally, it is easier to investigate and bring problems to light when the evidence is easier to access; however, more serious human rights violations and ethical issues may lie in problems that are more difficult to investigate, problems that are not even recognized as problems, and problems that are not considered appropriate as topics of academic study. It is only because the parties involved risked their lives to organize protests and spearhead efforts to make information public that light has been shed on these issues.

In this sense, this project is something that only Ritsumeikan University can attempt.”

What exactly does it mean that this project is “something that only Ritsumeikan University can attempt?” Professor Goto explains.

“Ritsumeikan University is home to the Graduate School of Core Ethics and Frontier Sciences, to which both Professor Matsubara and I belong, as well as centers like the Institute for Ars Vivendi. Many people with disabilities and other parties involved work here, and over the years we have accumulated a track record of research on the intersection between medicine and disabilities. In the years ahead, it will become increasingly commonplace for people in society to live with illnesses and disabilities. When we try to learn something from the past, like we are doing with this project, the archives and human networks established by Ritsumeikan’s educational and research institutions are a great help."

According to Professor Matsubara, the care with which Ritsumeikan University has treated the parties involved in its research is one of its biggest features, academically speaking.

“There has always been a disparity of viewpoints between physicians and scientists and their subjects, that is to say, paternalism. When people are unilaterally forced to accept a certain viewpoint, such as 'people with disabilities should do this or that,' the advice itself is often detrimental to the parties involved. Instead of just looking at someone’s illness or disability, if you look at them as a whole person who is a person living with that illness or disability, you will come to see something completely different. This is precisely what disability studies has been dealing with, and it is what we have been promoting at Ritsumeikan in the field of Ars Vivendi (the living arts).

At Ritsumeikan University, ever since we were working on the Global COE Program, the predecessor to the Institute for Ars Vivendi, we have been pioneering the field of Ars Vivendi with a stance that is extremely unique in Japan, namely, that people with illnesses and disabilities are involved in academic research as researchers. It is because of strengths like this that we are fully committed to this project."

Professor Goto has a vision he hopes to realize at Ritsumeikan University through this project.

“Using the Graduate School of Core Ethics and Frontier Sciences and the Institute for Ars Vivendi as bases, we would like to pioneer research methods that engage the parties involved in a more systematic way in humanities disciplines such as history and medical sociology. As the series of government responses to COVID-19 has made clear, healthcare policy has a serious impact on people’s lives as well as implications for human rights. We believe that the study of issues like these should be firmly established as a research field for the 21st century in which we live. For this reason, we would like to establish a research center for the history of medical and healthcare policy at Ritsumeikan University.”