%0期刊文章%@ 1438-8871 %I Gunther Eysenbach %V 12% N 4% P e47 %T台湾通过互联网建立公民共识的基因检测伦理指南%林阿，陆阿，梅秀%钟阿，杨俊智%杨志明%+台北医科大学卫生保健管理学院，台北市吴兴街250号，110，台湾，886 2 27361661 ext. 3610，cyang@tmu.edu.tw %K伦理%K基因检测%K互联网%K公众参与%K公众参与%K参与式医学%D 2010 %7 18.10.2010 %9原创论文%J J医学互联网Res %G英文%X背景:随着遗传学的飞速发展，基因检测的应用日益普及。测试结果对接受测试的个人及其家庭产生了巨大的影响。基因检测的伦理、法律和社会影响(ELSI)不容忽视。互联网是一个潜在的公众参与工具。目的:本研究旨在通过公民参与的方式，通过互联网建立台湾基因检测的伦理准则。方法:采用网络应用和德尔菲技术修改的公民共识会议研究方法。公民共识会议是一种公众参与机制。基因检测伦理准则草案是由一个10人专家小组撰写的。德尔菲技术被应用于通过互联网招募的公民小组，直到达成共识。 Our research population was restricted to people who had Internet access. Results: Included in the citizen panel were 100 individuals. A total of 3 individuals dropped out of the process. The citizen panel was exposed to the issues through Internet learning and sharing. In all, 3 rounds of anonymous questionnaires were administered before a consensus was reached in terms of importance and feasibility. The result was ethical guidelines composed of 4 categories and 25 items. The 4 categories encompassed decision making (6 items), management of tissue samples (5 items), release of results (8 items), and information flow (6 items). On a scale of 1 to 10, the average (SD) importance score for the decision-making category was 9.41 (SD 0.58); for the management of tissue samples category, the average score was 9.62 (SD 0.49); for the release of results category, the average score was 9.34 (SD= 0.59); and for the information flow category, the average score was 9.6 (SD = 0.43). Exploratory analyses indicated that participants with higher education tended to attribute more importance to these guidelines. Conclusions: The resulting recommended ethical guidelines had 4 categories and 25 items. We hope through the implementation of these guidelines that mutual trust can be established between health care profession and the general public with respect to genetic tests. %M 20965872 %R 10.2196/jmir.1467 %U //www.mybigtv.com/2010/4/e47/ %U https://doi.org/10.2196/jmir.1467 %U http://www.ncbi.nlm.nih.gov/pubmed/20965872