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。在这一年中，作为初步步骤，NIH临床中心使用了800多份同意书，用于评估如何描述此类研究。一份43项的调查问卷围绕6个关键主题展开。有232份同意书讨论了这些信息，调查人员正在完成这项评估。明年，我们将对450个对象进行定量调查，以确定人们对哪些信息感兴趣，以及这些偏好的相对强度。该项目将从主题焦点小组开始，包括遗传疾病研究的先前参与者和其他来自公众的人。这些焦点小组的结果将用于对这些问题进行定量调查。

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 subject 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 year, as a preliminary step, the more than 800 consent forms used at the NIH Clinical Center were used to assess how such research is described. A 43item questionnaire was developed around 6 key topics. There are 232 consent forms that discuss this information, the investigators are in the process of completing this evaluation. Next year we will conduct a quantitative survey in 450 subjects to determine what information people are interested in knowing and the relative strength of these preferences. This project will begin with focus groups of subjects including prior participants in genetic disease research and others from the general public. The results of these focus groups will be used to develop a quantitative survey of these same issues.