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Research on schizophrenia using human subjects poses ethical challenges to researchers-and to advocacy organizations-even though we know it is vital to understanding the illness and developing better treatments. The crux of the challenge is the fact that this profoundly disabling disorder may impair a person's ability to understand the facts about the research and their implications and, therefore, to make well-reasoned judgments about participation. Particularly where the risk is more than minimal and there is no immediate direct benefit to the participant, the researcher must do whatever is needed to protect the people volunteering for the study and to ensure that they provide meaningful, informed consent throughout the trial.
The Maryland Psychiatric Research Center has paid close attention to these issues. In 1995, Dr. William T. Carpenter, Jr., the center's director, became aware of the ethical questions raised during psychiatric research at large and decided his program had to incorporate even more safeguards than those provided by the routine review of research by an institutional review board (IRB) and routine approaches to consent. He took his staff on a day-long retreat to develop new approaches for protecting consumers. The center's resulting program, recently reviewed by the federal Office of Protection from Research Risks, illustrates a number of ways to enhance ethical protections and informed consent.
Other research locations have developed other educational aids, have assigned specific staff to advocate for participants, or hold weekly meetings with consumers about their research program and specific research protocols to promote better understanding.
Unfortunately, these "best practices" are far from universal. NAMI must establish models for how research and researchers interact with us and our relatives and advocate actively until best practices become routine practices.
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