Abstract
This article aims to study whether deliberative democracy and citizen’s knowledge was realized in the discussions for legislative measures addressing intractable diseases. My analysis selects the discourse of bureaucrats, experts and especially representatives of patient advocacy groups from the proceedings of the Committee for Measures for Intractable Diseases as well as of its associated working group. I divided the time that Committee for Measures for Intractable Diseases had been held into three periods. The second and third periods are analyzed in this article. Some current problems facing those with intractable diseases were pointed out in the second period. Several drafts of policies for problem solving were discussed in the third period, and differences among the patients, bureaucrats and experts were uncovered. The results of the analysis indicate that the bureaucrats provided a forum to discuss changes in the policy for measures addressing intractable diseases and got to claim democratic legitimacy. That is, the bureaucrats tried to take into consideration some expert and life knowledge. However, it is questionable whether the interaction among the stakeholders truly produced citizen’s knowledge.
