Assessment of a decision aid to assist genetic testing research participants in the informed consent process.
Assessment of a decision aid to assist genetic testing research participants in the informed consent process.
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评估决策辅助工具，以协助基因检测研究参与者参与知情同意过程。
DOI：
10.1089/gte.2004.8.336
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发表时间：
2004
期刊：
影响因子：
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通讯作者：
Jennings-Grant,T
中科院分区：
文献类型：
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作者：
Sorenson,JR;Lakon,C;Spinney,T;Jennings-Grant,T
在基因检测研究中，将心理学中的决策理论应用于知情同意的内容和过程的关注有限。数据来自一项研究，该研究开发并评估了基于心理学理论的决策辅助，作为知情同意过程的一部分。这种创新的方法帮助处于危险中的妇女评估参与一项研究项目的后果，该项目为她们提供免费的血友病A基因携带者检测。结果表明：（1）决策辅助可以被纳入同意过程，几乎没有问题;（2）不同教育背景的妇女可以完成决策辅助;（3）虽然妇女考虑基因检测的许多后果，但她们的主要焦点是对家庭的影响;（4）这与研究人员为基因检测准备的典型的利益-危害声明形成鲜明对比。
Limited attention has been given to applying decision-making theories from psychology to the content and process of informed consent in genetic testing research. Data are presented from a study that developed and assessed a psychological theory-based decision aid as part of the informed consent process. This innovative approach assisted at-risk women in assessing the consequences of participating in a research project that offered them free hemophilia A genetic carrier testing. Results suggest: (1) the decision aid can be incorporated into the consent process with few problems; (2) women of varying educational backgrounds can complete the decision aid; (3) while women consider many consequences of genetic testing, their primary focus is on the implications for their family; and (4) this is in marked contrast to the typical benefit–harm statements prepared by researchers for genetic testing.