Laboratory for Biomedical Ethics and Co-design

This laboratory aims to collaborate with biomedical scientists, patients, the public, and experts in ethical, legal, and social issues (ELSI) to co-design a conducive environment for these sciences.

One of our themes is genetic discrimination (GD). GD occurs when an individual or a group is negatively treated based on actual or presumed genetic characteristics. Our laboratory is currently tackling this issue by collecting examples of GD in Japan through various channels, including social media, government reports, and a past survey of cancer and rare disease patients. We also attended the annual meeting of the Genetic Discrimination Observatory, led by McGill University in Canada, to report on the situation in Japan and to understand the global landscape of current and future GD.

We also co-hosted a symposium entitled “Color Vision Testing and Educational and Occupational Restrictions in Modern and Contemporary Japan: Rethinking Boundary-Making in the Era of Genomic Medicine” in collaboration with the Biological Unit of the History of Science Society of Japan. In the past in Japan, restrictions on educational advancement and employment based on color vision were widely practiced. Because color vision differences are basically inherited in a sex-linked manner, they were also regarded as an issue in relation to marriage and reproduction. In the symposium, we sought to connect this historical background with recent debates surrounding GD, which led to lively discussions.

In addition, we supported and co-organized a closed seminar with Barbara Bierer, Professor of Medicine at Harvard Medical School, together with the Ethics and Social Co-Creation Project within the AMED Program for Accelerating the Realization of Regenerative, Cellular, and Gene Therapies. The seminar addressed ethics education and training for researchers and ethics professionals in advanced biomedical research. We supported Professor Bierer’s visit, further strengthening an existing relationship established through her 2020 IMS Seminar.