of a voluntary health organization, the National Hemophilia Foundation (NHF), in the communication of information to physicians and individuals with hemophilia.


Critical Questions

The Committee addressed four fundamental questions about the content and process of risk communication:

  1. What clinical options for risk reduction, even if marginally effective, were available and could have been communicated?

  2. What information was actually communicated to patients?

  3. What were the institutional obstacles to risk communication?

  4. What were the social and cultural obstacles that influenced physician-patient relationships and risk communication?

To better understand how information about the risks associated with blood and blood products was actually perceived and responded to at the clinical level, the Committee utilized a case study approach. This approach provided the means for the Committee to gain an in-depth familiarization with the context and culture of hemophilia treatment. It also helped illuminate the range of possible clinical options that existed during this period of uncertainty, and to assess their impact in these instances. Finally, the Committee evaluated the institutional, social, and cultural obstacles to communication about the risk of using blood and blood products.

Critical Factors

Three critical factors in the environment for individuals who are dependent on blood products help explain risk communication patterns: (1) progress in the treatment of hemophilia; (2) the development of a national network of hemophilia treatment centers; and (3) the medical community's consideration of hepatitis as an ''acceptable risk." These factors shaped the decisionmaking process as the AIDS epidemic emerged.

The advent of antihemophilic factor (AHF) concentrate in the early 1970s brought a remarkably effective means to treat a disease characterized by spontaneous bleeding, pain, crippling, and early death (Jones and Ratnoff 1991). AHF concentrates significantly altered the morbidity and mortality associated with hemophilia, dramatically improving the quality of life of those affected. In

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