Conceptual Analysis of Genetic Knowledge in Illness Narratives

2015 Fiscal Year Final Research Report

• Project/Area Number: 25380700
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Sociology
• Research Institution: Tokai University
• Principal Investigator: MAEDA Hiroki 東海大学, 総合教育センター, 准教授 (00338740)
• Co-Investigator(Kenkyū-buntansha): NISHIMURA Yumi 首都大学東京, 人間健康科学研究科, 教授 (00257271)
• Project Period (FY): 2013-04-01 – 2016-03-31
• Keywords: 遺伝性疾患 / 病いの経験 / 物語 / 概念分析 / エスノメソドロジー / 現象学

Outline of Final Research Achievements

The purpose of this research is to explicate how patients in Japan with autosomal dominant polycystic kidney disease (ADPKD) experience their illness by analyzing data obtained from interviews. Since the gene responsible for ADPKD was identified in the mid-1990s, patient and their family experiences with the illness have been changing．Patients diagnosed with ADPKD became able to understand the life of a parent with the same disease from a new perspective. Greater understanding of the genetic disorder encouraged patients to pass down knowledge to younger generations and to participate in clinical trials. Patient groups in Japan have played an important role in disseminating information about clinical trials. The recent approval of a new drug was a direct result of activities of patient groups, and created new possibilities. We explicated the shift in perception of this disease among patients and their families and its effect on their lives.

Free Research Field

社会学