Perceptions of using biological materials in research

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This project is an empirical evaluation of attitudes of patients and the public towards research involving human biological specimens. Over the last few years there have been a number of recommendations about what information should be provided to subjects who are considering providing consent for the research and storage of human biological specimens. This is based primarily on theoretical assessments of what information should be important to subjects as well as speculations on what information they would want to know. However there is little data about what information patients are actually interested in hearing, why they are interested in it, and how they think that this information might influence decision to participate in research. During this past year, a review of policy statements about stored tissue research was completed. This analysis defined seven domains of recomendations. Additionally, a review of 832 consent forms from the NIH Division of Intramural research was completed. 256 consent forms related to studies whose major or minor purpose was genetic or unspecified future use were identifed. These consent forms were coded based on the seven domains found in the policy review. The data has been entered into SPSS and is being analyzed to assist in the development of pateint survey of attitudes. The survey is currently in draft form and is soon to be pilot tested.