Interpreting the Meaning of "Heredity" and " Drug-Induced Sufferings": From the Practice of Educational and Awareness Activities in the Hemophilia Community

2022 Fiscal Year Final Research Report

• Project/Area Number: 19K02151
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Review Section: Basic Section 08010:Sociology-related
• Research Institution: Shujitsu University
• Principal Investigator: NAKATSUKA Tomoko 就実大学, 人文科学部, 准教授 (50457131)
• Project Period (FY): 2019-04-01 – 2023-03-31
• Keywords: 遺伝性疾患 / 薬害 / 血友病 / 医療社会学 / ジェンダー

Outline of Final Research Achievements

1. Traditionally, the symptoms of hemophilia and genetic issues related to it were normalized as a gender-based asymmetric problem (gender asymmetry) based on the sexes of "men" as "hemophilia patients" and "women" as "carriers." However, in exploring the trends of the hemophilia community, it has become clear that care and support for hemophilia carriers are being promoted by questioning the boundaries between the concepts of "hemophilia patients" and "carriers." 2. Additionally, it was revealed that sharing and passing down experiences and histories of "drug-induced sufferings" surrounding hemophilia not only remain within the hemophilia community but also bring to light issues that underlie various drug-induced sufferings, adopting the strategy of influencing society.

Free Research Field

社会学

Academic Significance and Societal Importance of the Research Achievements

本研究は、薬害エイズ事件を経験した国内の血友病コミュニティに関わる人々が、「遺伝」や「薬害」をめぐる問題をいかにとらえ、教育・啓発活動を行っているか考察するものである。「遺伝」や「薬害」に関わる概念やその変容を検討し、その社会的・文化的意味を明らかにすることで、学術的な知見の蓄積や社会的な認識や価値の創造に寄与すると考える。