Genetic Citizenship in Rare Diseases Policy: Patient’s Participation for Genomic Science Research

Monday, 16 July 2018: 18:15
Oral Presentation
Saori WATANABE, Meiji Gakuin University, Japan
Genetic information and disease’s data were negative information that once caused prejudice and discrimination for patients. However, the practice of patients who positively utilize them as means to engage with society has been emerging from the end of the 20th century. The aim of this research is to analyze the actual phase of patient participation policy based on Genetic Citizenship.
Genetic Citizenship is a sociological concept concerning a form in which individuals participate in civil society through promoting scientific research of the disease. In the United States, Europe, and Japan since the 1980's, patients and families of rare diseases themselves have organized clinical and genetic information database and played the leading role of scientific research. Since the 1990s, new scientific achievements to identify factor genes by constructing registries and biobanks have been drawing attention in rare disease’s research.
In this research, I report the findings from the in-depth interview and semi-structured surveys of Japanese patient organizations and medical scientists. The target group is divided into three groups: (1) patient organizations that have already engaged in research, (2) patient organizations that have not yet been implemented, and (3) researchers who are researching the rare disease.
Promotion of research participation brings the complex impacts and the innovation of senses to medical treatment. We analyze the social resources provided by patients and researchers, factors of barriers to participation, impact on people's awareness for medical treatment. Patient participation has brought about a new phase of the health rights campaign, and at the same time, it demands patients to provide advocacy based on professionalism.