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340:100-3-10. Research initiatives
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Issued 5-18-92
DDSD supports research initiatives that contribute to the advancement of knowledge about the causes of mental retardation, prevention and treatment strategies, and activities which promote accelerated realization of functional independence.
- (1) Research proposals must include evidence of benefit to participants prior to authorization.
- (2) All research activities will comply with the strictest standards of professional ethics and conduct.
- (3) Research initiatives employing use of painful stimuli are prohibited.
- (4) Research activities that may place a client's rights at risk are: initiated only with the informed consent of clients/guardians/advocates; and with the authorization of the respective Area Human Rights Committee(s) and Local Administrator(s).
- (5) Research designs using control groups will ensure appropriate therapy or treatment for all individuals participating in the study.
- (6) Clients/Guardians maintain the right to refuse or withdraw from participation in research activities.
- (7) Clients/Guardians are informed of the intent, scope and, if desired, aggregate findings of formalized studies conducted to assess the impact of services delivered through provisions of the IHP. Formalized service studies required as a condition of service participation are subject to oversite by a committee including consumer representation.
- (8) Client privacy, confidentiality, and rights are insured in the design and conduct of any research initiative inclusive of formalized service studies.
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