Perceptions of using biological materials in research

该项目是对患者和公众对涉及人体生物标本的研究的态度的经验性评估。在过去几年中，就应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提出了一些建议。这主要是基于对哪些信息应该对受试者重要的理论评估，以及对他们想要知道哪些信息的推测。然而，关于患者实际上对什么信息感兴趣，为什么他们对它感兴趣，以及他们认为这些信息可能如何影响参与研究的决定，几乎没有数据。在过去的一年里，完成了对关于储存组织研究的政策声明的审查。这项分析定义了推荐的七个领域。此外，来自NIH内科研究部的832份同意书的审查已经完成。确定了256份与主要或次要目的为遗传或未指明未来用途的研究有关的同意书。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。这些数据已被输入SPSS，并正在进行分析，以协助开发Pateint态度调查。这项调查目前正在起草中，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.