nature and style of the arguments in other parts of the workshop, based on scientific and philosophical reasoning, were in stark contrast to the personal stories and perceptions of those whose lives had been directly affected by diseases for which transplants or novel medical therapies offered the only hope of survival.
One of the clearest messages conveyed how patients often feel excluded from decisions made by the medical, scientific, ethical, and public policy communities. The debate about transplanting baboon bone marrow into an AIDS patient in San Francisco prominently displayed this message for two reasons. First, the experiment in question was in the process of being considered for approval by the Food and Drug Administration (FDA). Second, AIDS patient activists in favor of the experiment represent a well-organized and sophisticated patient advocacy group that has been successful in bringing patient perspectives to debates about the accessibility and applications of new AIDS therapies. A leader from this community pointedly reminded the committee that it should have included a patient representative.
Brenda L. from Project Inform in San Francisco presented the position of AIDS activists by directly addressing some of the most common conflicts among stakeholder groups. For example, regarding research into new therapies, she asked:
What is the ultimate goal? Is it to answer questions that pertain to the public health or is it to answer interesting academic questions? Compounded with this is the fact that it is difficult to know if those interesting questions are going to impact on the public health or if they will just raise more interesting academic questions. One has to wonder if some of the delays aren't just due to pure academic rhetoric flying back and forth. One knows that a lot of delays are happening because the scientists have proprietary interests over their own science. Sometimes industry and their proprietary interests get involved. That invariably ends up hurting the patient population.
On issues of informed consent, the AIDS bone marrow experiment is unique in that the patient actively participated in much of the planning and development of the experimental procedure. Nevertheless, Ms. L. spoke about the subjects in early transplant experiments in terms with which many physicians and ethicists would likely agree.
As with any new procedure, there will be those who will sacrifice their lives in the name of science. The history of transplantation clearly has been such that most people who participate in earlier studies don't fare as well. These first patients carried a heavier burden of risk. However, if it weren't for their participation, such as in the early lung transplants, and some of them actually sacrificing