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RD ELSI Research in Japan

Who we are

Japan was one of the first countries in the world to implement a policy to address “intractable diseases with a small number of patients,” commonly known as “rare diseases” in the 1970s. Currently (as of 2021), such measures are being implemented in other countries around the world. Ethical, Legal and Social Issues (ELSI) for rare diseases refers to the ethical, legal, and social issues related to rare diseases.

As part of the Practical Research Project for Rare/Intractable Diseases funded by the Japan Agency for Medical Research and Development (AMED), our group has been conducting ELSI research on rare diseases since November 2020. Our research group comprises diverse members who specialize in medicine, genomic medicine, regenerative medicine, philosophy, bioethics, research ethics, law, and sociology. Our current research on ELSIs of rare diseases focuses on a wide range of matters ranging from the practice of medical research and treatment to theoretical studies, in accordance with each member’s expertise. One member of our group is ASrid, a non-profit organization that provides support for patients with rare diseases and participates in the Patient Advocates Constituent Committee of IRDiRC. ASrid has assisted us in providing information on ELSI of rare diseases to patients and the public. In addition, with support from Orphanet Japan, which is already providing information on rare diseases for patients and the public, we also provide useful information on the webpage of Orphanet Japan.

We, the research group, would like not only to accelerate international ELSI research on rare diseases by establishing a research network and an information platform for ELSI of rare diseases, but also to continue with activities that will benefit all people influenced by rare diseases.

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