Aｎ Attempt to Analyze the Narrative World of the Life-Stories of Doctors and Patients Involved in the HIV Tainted Blood Product Incident in Japan

Aｎ attempt to analyze the narrative world of the life-stories of doctors and patients involved in the HIV tainted blood product incident in Japan.

 

We had conducted the research projects started in 2001 ended 2010, which aimed at collecting and analyzing the life-stories of doctors and patients involved in the HIV tainted blood product incident in Japan. This endeavor culminated in the final reports consisting of 3 volumes which amount to 1358 pages. Against the simplified bipolar model of the perpetrator and the victim of this incident, we found more complicated and individualized world of life-stories which would reflect the differences of social and historical context where each interviewee was situated at that time. First, the doctors had been thrown into the uncertainty and indecisiveness toward the then unknown disease of HIV infection, which would result in refraining from taking a clear-cut attitude concerning the use of non-heated concentrated blood product. For most doctors, the change from cryoprecipitate to concentrated product meant undoubtedly a quantum progress of medical care treatment for hemophiliacs; to return to the old method of treatment looked retrogression and might run the risk of engendering the lives of hemophiliacs by the higher rate of intracranial bleeding.

  Second, the older generation of hemophilia in Japan unanimously experienced the unbearable painfulness of bleeding and was told by parents that they would die young. For them, the anti-hemophilia factor concentrate was regarded as the miracle medicine to ease the pain and to endow a long life. However, facing up the occurrence of HIV infection, they felt being kept separated from every trustworthy information sources. Although, the frank communication between doctors and patients should be acutely demanded at the time of confusion and uncertainty, we found little evidence of any interchange between them.