6. Community

Consensus:

Disagreement within the scientific/medical community, the HIV-affected community, and government concerning the appropriateness of scientific research is common. However, work on informing and developing consensus within these sectors must be carried out rigorously.

Discussion:

There was extensive comment on the difficulty in defining community, deciding what community is most important to consult with and choosing appropriate key informants. However, no concrete suggestions were made on how to address this issue.

When there is lack of consensus within a particular community, it is often due to inadequate information, and the process of education of the relevant sectors should be a major part of consensus-building.

Controversy:

There was debate concerning who should be able to veto a trial (scientists, community, government, and sponsor), or decide to continue in spite of lack of consensus.

Some believe that effective individual informed consent will provide adequate protection when there are issues that cannot be agreed upon by scientists, ethicists, and community advisory boards. However, some do not agree that the decision should be left to the individual if there is significant disagreement at the level of these planning groups.