Biomedical Ethics and Policy on Emerging Biomedical Technologies

• In Event: Concepts and Practices of ELSI: 1. ELSI as a Political Terrain

Abstract

Emerging biomedical technologies, such as genome sequencing and genome editing are increasingly becoming a hot topic for debate across the world. As many national-level initiatives in genomics aim to utilize genome sequencing for individualized diagnosis, prevention, or even treatment of a range of diseases, it is becoming imperative to address its ethical, legal and social implications (ELSI), such as the value of front-loaded informed consent, privacy protection using genomic data and biological samples, and the uncertainty on the return of individual results. In contrast, on genome editing, while much expectation is directed towards development of new approaches to prevention and treatment, broader ethical and policy issues, including the interest of future generations and the concerns over human enhancement and biodiversity conservation, have been debated. In both cases, however, not only scientific approaches but also social and policy ones should play key roles particularly in balancing effective scientific advancement and protection of (local) social values. Reflecting on the recent experience in Japan, this paper explores biomedical ethics and policy on these emerging biomedical technologies, and suggests some major issues that need to be addressed, in particular relation to the nature and roles of government interventions, such as ethics regulation and research funding.

Author

• Jusaku Minari, Kyoto University