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ARLINGTON, VA - In its quarterly scientific publication, The Decade of the Brain, the National Alliance for the Mentally Ill (NAMI) has published the results of the first survey ever taken of consumers with severe mental illnesses (SMIs) about their views of scientific research.
In a telephone survey of a random sample of 226 individuals from 43 states, NAMI found:
In an article accompanying the survey, NAMI Executive Director Laurie Flynn, a member of the President's National Bioethics Advisory Commission, declares: "Consumers and family members strongly believe in research.…But our strong support for research hinges upon the appropriate care of consumers who volunteer as research subjects.…Research and ethics must go hand in hand."
In a separate article, Steven E. Hyman, M.D., director of the National Institute of Mental Health (NIMH) and David Shore, M.D., NIMH's associate director for clinical research, acknowledge that "NIMH and all psychiatric investigators must redouble efforts to maintain the trust that potential and active participants place in the excellence and safety of the research enterprise."
In another article, Evan G. DeRenzo, Ph.D., consulting bioethicist to NAMI and project director for NAMI's institutional review board (IRB) training program, cites the importance of recruitment and training to "encourage the participation of consumers and family members on IRBs at research facilities throughout the country." Equally important is the need to strengthen procedures that ensure informed consent. In another, Jeffrey Lieberman, M.D., director of the Mental Health & Neuroscience Clinical Research Center at the University of North Carolina at Chapel Hill also offers several fundamental principles to guide research involving consumers:
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