難病、Rare Diseases に関する医療社会学の研究者です。

希少疾患に関わる多様なステークホルダーを対象として、質的研究をコアにしたMixed Method, Diverse methodological approaches を用いて調査研究を実施しています。

◆患者・市民参画（PPIE）の研究と実装に取り組んでいます。

難病や希少疾患の患者さんやご家族の視点を医学研究・臨床研究に取り入れるための課題に関する調査研究を行いながら、実際に国内の研究プロジェクトでPPIEを実装する事にも取り組んでいます。

◆希少疾患のELSI（倫理的法的社会的課題）を研究しています。

希少疾患を対象とするゲノム医療や幹細胞研究におけるELSIについて調査研究をしています。

◆難病政策や公費医療について研究しています。

国立療養所や国立病院などの調査と公的統計資料のアーカイブズ化に基づいた、実証的な難病政策と公費医療の歴史社会学分析を行っています。

Saori Watanabe is a sociologist based at the Institute of Medical Science, The University of Tokyo. Her research focuses on rare diseases and health research from sociological perspectives.

Her doctoral dissertation, titled “A Study on Rare Diseases Policy in Japan: Public Expenditure Medical Care by Diseases-Category-Based Model,” examined the historical and sociological development of rare disease policy in postwar Japan and in comparative international contexts.

She is currently conducting qualitative and quantitative research on the ethical, legal, and social issues (ELSI) surrounding rare diseases. One of her projects includes a survey on patient and public involvement/engagement (PPIE) in biomedical research, along with practical initiatives to promote the active participation of patients and their families. She is also engaged in multiple ELSI-related research projects in the fields of genomics and stem cell research. 

Her recent work is supported by a Grant-in-Aid for Scientific Research (KAKEN), and she also participates in ELSI-focused projects funded by AMED, JST, and the Ministry of Health, Labour and Welfare of Japan.

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Department of Public Policy

Institute of Medical Science, University of Tokyo

4-6-1 Shirokane-dai, Minato-ku, Tokyo 108-8639, Japan

Email: saoriwatanabe@ims.u-tokyo.ac.jp

http://www.pubpoli-imsut.jp/

https://www.ims.u-tokyo.ac.jp/imsut/jp/