Perceptions of using biological materials in research

该项目是对患者和公众对涉及人类生物标本的研究态度的实证评估。在过去的几年里，有一些关于应该向考虑同意研究和储存人类生物标本的受试者提供哪些信息的建议。这主要是基于对哪些信息对受试者重要的理论评估，以及对受试者想要了解哪些信息的推测。然而，关于患者真正对听力感兴趣的信息，他们为什么对它感兴趣，以及他们如何认为这些信息可能影响参与研究的决定，几乎没有数据。在过去的一年中，完成了对储存组织研究的政策声明的审查。该分析定义了7个建议领域。此外，还完成了对来自NIH校内研究部的832份同意书的审查。确定了256份与研究相关的同意书，其主要或次要目的是遗传或未指明的未来用途。这些同意书是根据政策审查中发现的七个领域进行编码的。这些数据已输入SPSS，正在进行分析，以协助制定病人态度调查。该调查目前处于草案阶段，不久将进行试点测试。

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.