(Summarized from the NAMI Public Policy Platform)
NAMI members strongly support severe mental illness research, including research involving human subjects, as this is the basis for all future advances in treatment. However, research involving human subjects must be in accord with the highest scientific, medical, and ethical standards and must protect and honor the individuals and their families who make this contribution to scientific progress.
Specifically, NAMI demands that:
1) Research subjects give truly informed consent and that they and their families fully understand the protocols and risks and benefits of the research.
2) Independent and ongoing evaluation of research subjects’ capacity to consent.
3) IRBs include consumers and family members as members.
4) Consumers may withdraw from a study at any time, without penalty.
5) At the end of a study, or if a consumer terminates participation prematurely, ongoing effective treatment and aftercare are assured, as is feedback on the study results.
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