Section R. 325.9075 - Scientific advisory panel; release of information for researchRule 5.
(1) The director of the department shall appoint a scientific advisory panel of not less than 3 scientists to review research proposals for which a release of information which is maintained by the department and which identifies an individual reported to have a diagnosis of a birth defect is required.(2) The scientific advisory panel shall review a research proposal that requires the release of information that identifies an individual who has a reported diagnosis of a birth defect.(3) The panel shall, in writing, advise the director on the merits of the study.(4) The study or research project shall not publish the name of any individual who is or was the subject of a report of a birth defect that was submitted to the department. The study or research project shall not release any identifying number, mark, or description that can be readily associated with an individual who is or was the subject of a report of a birth defect that was submitted to the department. A formal memorandum of agreement that is signed by an authorized representative of the department and the director of the research project shall include all of the following provisions:(a) That electronic files, optical files, or hard copy of the data provided by the department shall not be copied for retention, resold, or otherwise provided to another person or agency and will be returned to the department upon completion of processing of the study.(b) That any reports or published papers relying in whole or in part on the data furnished by the department to the study or research project shall acknowledge the Michigan birth defects registry of the Michigan department of health and human services as the source of the data.(c) That a prepublication copy of all resulting papers shall be sent to the department at least 15 days before to the expected date of publication.Mich. Admin. Code R. 325.9075
1991 AACS; 2017 MR 24, Eff. 12/26/2017