NAMI Publishes First-Ever Consumer Survey On Scientific Research

Posted on April 30, 1999

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:

• An overwhelming majority (99 percent) believes SMI research is extremely important. "We have just grazed the surface in understanding severe mental illness," said one NAMI consumer. "We need more research. We need cures."
• A majority (82 percent) also expressed willingness to participate in research, with 76 percent saying that they would participate even if the research offered them no direct benefit. "Mental illness has been such a burden for me," observed one NAMI consumer. "I would be willing to do anything to help myself and others". Declared another: "I would volunteer for research even if it didn't help me because it is very important for future generations."
• Approximately a quarter (27 percent) of those surveyed already had participated in psychiatric research projects ranging from surveys to clinical-trial tests of new medications.

Although most of the consumers surveyed indicated a willingness to participate in research, many of them (59 percent) offered caveats. Consumer support for research does not translate into an indifference to consumer protection and informed consent. In an article summarizing the results, NAMI Director of Research Laura Lee Hall, Ph.D., writes: "Consumers want dignity. They want information. They want proper care. They can make judgments about what they are willing to participate in and what is not reasonable given their own conditions and individual responsibilities."

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:

• Knowledge to be gained by a study must outweigh risks.
• Efforts must be made to minimize risks.
• The individual autonomy of research subjects must be respected. Participation must be voluntary, and participants must be free to drop out.
• Informed consent must be obtained. Consumers should participate in a study only after risks and benefits have been effectively communicated.
• Research is not treatment. Consumers should not believe there is a guarantee that they will receive a direct benefit, other than payments. The purpose of research is to produce information that can be generalized to benefit future science, society and patients.
• Researchers and personal physicians may have different opinions about a study and an individual's participation. Consumers should ask both whether it is in their best personal interest to participate.
• Information from the study, whether positive or negative, general or specific to a consumer should be made available to a consumer and the medical community in a timely manner, so long as doing so does not compromise the study.