THE RIGHT TO PARTICIPATE IN RESEARCH STUDIES

Institutional review boards for the use of human subjects in scientifi c studies were initially established to focus on protection of human s ubjects from the risks of research. It has become evident in recent ye ars, however, that it is also important to protect the rights of indiv iduals to have access to the benefits of research participation. These include, but ore not limited to, certain experimental drugs or treatm ents, closer monitoring, free care or direct remuneration, and societa l benefits of results of studies on specific populations. Researchers, so long sensitized by their respective institutional review boards to the need for protection of the subjects, now must also focus on the a dded burden of efforts to include individuals and the increased effort s it may take to protect the safety and rights of certain populations, including patients with AIDS, women, minorities, children, and the el derly. Additional care must be taken to design appropriate studies, re cruit an appropriate spectrum of the population, craft a complete yet understandable and nondeterent informed consent form, and make efforts to assure that participants are informed.