Research bioethics in the Ugandan context II: Procedural and substantive reform

In July 1997, the voting representatives at the National Consensus Conference (NCC) on Bioethics in Health Research voted unanimously to adopt the proposed Guidelines for the Conduct of Health Research Involving Human Subjects in Uganda (Guidelines). This vote represented the culmination of a three-year

Attendees at the NCC included both voting representatives and non-voting participants. Voting representatives had been designated by the institutional entity with which they were affiliated to represent that entity at the NCC and to voice the concerns and opinions of the entity and its constituents. Voting representatives included individuals from various governmental organizations such as the Ministry of Health, the Ministry of Defense, the Attorney General's Office, the Uganda National Council of Science and Technology (UNCST), the National Drug Authority, and the National Cancer Institute; Makerere University; various medical associations, such as the Protestant Medical Association; nursing and pharmacists' professional organizations; various churches, legal service agencies, human rights organizations, and media personnel. The NCC had been widely advertised to encourage attendance and participation of non-affiliated persons. These included, for instance, university students, participants in ongoing research, and freelance media personnel. Both voting representatives and non-voting participants participated actively in the discussion and debate of the proposed Guidelines and revisions to the proposal. Proposed revisions to the proposed Guidelines could be made by any attendee from the floor. (See Appendix for listing of voting representatives.)