◇Nanbyo: ALS etc. 2008 ◇Nanbyo: ALS etc. 2009
◇Specified Non-profit Corporation “Ar”
■Projects Going forward
Regarding our activities in academic year 2008, several members of our project gave presentations at many conferences and seminars, including “the 6th general meeting of the Welfare Sociology Research Association”, “the 22nd general meeting of the Japanese Research Association for Community Development”, “the 5th general meeting of the Japan Society for Disability Studies”, “the Japanese Society of Science and Technology Studies”, “the 8th Japan/Korea/China International Conference/Pre-symposium on Housing Issues”, and “the 200th Japanese Society of Health and Medical Sociology Kansai Regular Research Meeting”. In the coming academic year we will continue to actively pursue projects with internal/external cooperative research, set down the results of individual research projects in the form of academic papers and books, and at some point in the future we aim to publish research results in publications such as Collected Writings on Intractable Diseases (tentative title) and Ars Vivendi of Intractable Diseases (tentative title) .
Looking ahead to the coming fiscal year, our plans include effectively utilizing the Ars Vivendi website as a method of sharing information pertaining to this research group and posting collected reports on the activities of project members on a timely basis.
■Study Group on Ars Vivendi of Nanbyo
Research Topic: Investigating the Ars Vivendi of Intractable Diseases (Nanbyo)
Participating Researchers: 16 Individuals in Total *Affiliations Are as of Academic Year 2008
Name Affliation Role
MAEKAWA Chieko＊ Graduate School of Core Ethics and Frontier Sciences Cooperation/Collaboration between Multiple Professions regarding People with Intractable Diseases.
AOKI Shintaro Graduate School of Core Ethics and Frontier Sciences Assistance Technologies and Systems
ARIYOSHI Reiko Graduate School of Core Ethics and Frontier Sciences Artificial Dialysis and Healthcare Economics
ITO Kayoko Graduate School of Social Sciences and Humanities, Chiba University Independent Living for Patients with Muscular Dystrophy
UEMURA Kaname Graduate School of Core Ethics and Frontier Sciences Guaranteeing Information of Patients with Intractable Diseases
KATSURAGI Teizo Graduate School of Core Ethics and Frontier Sciences Shiga Intractable Disease Alliance and Intractable Disease Policy/Administration
KAWAGUCHI Yumiko Graduate School of Core Ethics and Frontier Sciences Independent Living for ALS Patients
SAKURAI Hiroko Graduate School of Core Ethics and Frontier Sciences Ethical Issues concerning Infants with Congenital Diseases
SATO Hiroko Graduate School of Core Ethics and Frontier Sciences Support for Policies regarding People with Intractable Diseases
TAKEBAYASHI Yayoi Graduate School of Core Ethics and Frontier Sciences Research on Social Systems concerning People with Intractable Diseases
NISHIDA Miki Graduate School of Core Ethics and Frontier Sciences Support for ALS Patients Living Independently
HASEGAWA Yui Graduate School of Core Ethics and Frontier Sciences Support systems for people with Intractable Diseases
YAMAMOTO Shinsuke Graduate School of Core Ethics and Frontier Sciences Residential Spaces for ALS Patients Living Independently
HOTTA Yoshitaro Postdoctoral Fellow, Japan Society for the Promotion of Science Ethics/Ethical Issues regarding Care-related Labor
NOZAKI Yasunobu Postdoctoral Fellow, Kinugasa Research Organization, Ritsumeikan University Ethics/Philosophy of Intractable Diseases, Consideration of Various Ethical Issues concerning People with Intractable Diseases
KITAMURA Kentaro Postdoctoral Fellow, Kinugasa Research Organization, Ritsumeikan University Sociology/History of Patients with Haemophilia in Japan
1. Topics and Contribution to the Global COE Program Ars Vivendi
（1）Topics, Objectives and Impacts
The aim of this project is to create, promote and develop results generated by the Global COE Program Ars Vivendi. This project will proceed with investigations starting from the concrete point of the set of problems related to Japanese people with intractable diseases (including rare illnesses; see below), and experiment with ways of connecting academic research to technological development and policy proposals. While the Global COE Program Ars Vivendi is a project that goes beyond national borders, this project will develop its investigations based on the “everyday life” of Japanese people with intractable diseases and the “workplaces” of specialists dealing with people with intractable diseases. Deepening domestic research related to the Ars Vivendi will improve both the quantity and quality of research that can be disseminated abroad.
〈Significance of This Research〉
First, while research focusing on people with intractable diseases can be found in each field, compared to research concerning people with disabilities the quantity of this research is extremely small. In terms of both quantity and quality there is a need for improvement in the body of research dedicated to people with intractable diseases. Second, this research is spread across the natural sciences and the humanities/social sciences and as such has not been sufficiently systematized. This is one of the stated aims of the Ars Vivendi. Third, these research results cannot be said to have been sufficiently returned to or utilized by the people with intractable diseases who were their subject. They will be converted to forms that are easy for people with intractable diseases to make use of as needed. Based on these three aims, this project will plan research and disseminate research results while focusing on the participation in and ability to make use of this research by people with intractable diseases.
Regarding policies concerning people with intractable diseases in Japan, individual initiatives have been pursued in line with a fundamental approach established in the 1972, “Overview of Policies Dealing with Intractable Diseases”. When it comes to groups of people with intractable diseases, however, while they have carried out mutual support and peer counselling they have not normally been involved in policy planning and proposals. In addition to the spread of IT technology and palliative care, in recent years the environment surrounding people with intractable diseases, including efforts to reduce medical costs and the related emergence of proposals for euthanasia, has become quite harsh, as has the silent pressure society put on them. There is thus a need for research on intractable diseases commensurate with the challenges posed by this current state of affairs.
（2）Contribution to the Global COE Program Ars Vivendi
This project will contribute to the Ars Vivendi as follows. First, it will collaborate with already active research groups and projects and perform the function of bringing together and organizing their research results on a reasonable scale. Until now this program has made progress with research in various fields, but to properly fulfill its role it must engage in the consolidation of research in addition to its production. Second, through the publication of the Collected Writings on Intractable Diseases (tentative title) and Ars Vivendi of Intractable Diseases (tentative title), a collection of academic papers, it will also contribute to graduate students' writing and guidance. Third, if these activities are diligently pursued, in the future it should be possible to establish a “Research Center for Issues Concerning Intractable Diseases” (tentative name), an intractable disease version of the “Ohara Institute for Social Research, Hosei University”. Opening a “Research Center for Issues Concerning Intractable Diseases” would create a unique and unprecedented research institution and should make it possible to assemble succeeding cohorts of researchers concerned about people with intractable diseases.
2. Research Plan, Method and Publication of Research Products
Many of the graduate students taking part in this project are in the third year or later of their doctoral course and are looking to complete their doctoral thesis. As a result, the first priority will be to deepen their research on an individual basis. In addition, participants will also share research results when possible and jointly conduct appropriate subprojects. The following subcategories will be established within this project: “Daily life”, “History”, “Policy”, “Technology”, “Activism” and “Ethics”. Publication of results will also be placed at the center of this project’s research plan. As a first step, in academic year 2008 a collection of materials related to intractable disease, Collected Writings on Intractable Diseases (tentative title), will be published. Going forward, in academic year 2009 each graduate student will write papers on their respective research topics and these will be published in Ars Vivendi of Intractable Diseases (tentative title). While this project will focus primarily on intractable diseases, collaborative research with other related fields will also be welcomed.
Research will fundamentally be carried out in each of the subcategories described below. Research in the form of subprojects with multiple participants will be conducted as needed. In order to fulfill this project’s primary objective of deepening the research of individual graduate students, however, projects with multiple researchers will not be encouraged unnecessarily. We will also aim to compile and systematically organize research results through collaboration with existing research groups/projects. This project’s subcategories,“Daily life”, “History”, “Policy”, “Technology”, “Activism” and “Ethics”, are described below.
This research will elucidate in various dimensions the actual state of affairs in the daily lives of people with intractable diseases. In particular, it will consider the services needed to understand the needs of ALS patients living in Kyoto and provide the human and lifestyle support they require along with relevant supporting data such as the various policies in place and the actual living conditions of these patients. This is related to other subcategories such as “Technology”.
This research will elucidate the history of people with what are referred to as “intractable diseases”. This examination will include research touching on other subcategories such as “Technology” and “Policy”. There is an organization aiming to become an archive of resources pertaining to the history of people with intractable diseases, “Hokkaido Intractable Disease Support Network” , and we have been in contact with them since June 2008.
This research will examine policies concerning intractable diseases. It will aim to unravel the complicated relationships between the Long-term Care Insurance Act, the Services and Supports for Persons with Disabilities Act, the intractable disease industry, and healthcare policy, and ultimately to enhance the ability of intractable disease groups to negotiate with the government/administrative bodies. Through collaboration with the Study Group on Aging where appropriate, research will be conducted examining the changes in social security policy in post-war Japan.
This research will consider specific questions concerning medical technology directly connected to the body, information technology that serves as an interface with society, and construction technology. Examples of the sort of activities that will be pursued include the sharing of results on research into “ITO (Switch)”, IT technology, connection to other subcategories such as “Daily life” and “Ethics”, and the elucidation of developments in technology concerning people with intractable diseases.
Up to now the organizational foundation of patient activism on the part of people with intractable diseases has been weak, movements have faltered upon the retirement of key members, and there have been many cases in which organizations have collapsed. Such factors have been present, and the influence of intractable disease patient activism on society has not been adequately examined. This research will elucidate the “history” of this activism, and consider topics such as the financial problems facing patient associations going forward and methods of having activism reflected in “policy”.
This research will examine specific issues related to topics such as medical ethics and eugenic thought. The Study Group on Ethics of Birth has already been active in examining some of these ethical issues. Research will be conducted while sharing research results as necessary and collaborating with this group when appropriate.
As all of these topics are related to each other, ultimately they will presumably become interconnected in some form. Since this project prioritizes the research of individual graduate students, it will not pursue a single research topic. The results generated by this project will be the accumulated results produced by the individual participating researchers.
〈Methods of presenting research results〉
Graduate students will actively produce/disseminate research results by writing papers, research notes, etc. and through giving presentations at academic conferences and other venues. Apart from what cannot be made public due to specific circumstances, all information obtained through this project will be posted on the Ars Vivendi website. In conjunction with the fundamental activities described above, we will also engage in the publication of research results in various forms including the Collected Writings on Intractable Diseases (tentative title) and Ars Vivendi of Intractable Diseases (tentative title).
Translated by Robert Chapeskie
Proofread by KATAOKA Minoru