澳大利亚人类遗传学会立场声明:在线或直接向消费者提供基因组测试
Julia Mansour1,2, Rebekah McWhirter3, Alison McLean4,5,6
1Human Genetics Society of Australasia Ltd.
概括
卫生专业人员应指导患者直接向消费者 (DTC) 进行基因测试,强调知情同意,风险和益处. 确认DTC结果与认可的实验室进行可靠的健康决策.
科学领域:
- 遗传学 是一个遗传学.
- 生物伦理学生物伦理学
- 卫生政策 卫生政策
背景情况:
- 直向消费者 (DTC) 基因测试提供了可访问的DNA分析,但引起了有关知情同意,结果解释和临床实用性的担忧.
- 随着在线基因测试的日益普及,需要为医疗保健专业人员提供明确的指导方针,为患者提供有关其使用的建议.
- 了解患者的动机和DTC遗传测试的影响对于负责任的医疗保健实践至关重要.
研究的目的:
- 为医疗专业人员提供在线和直接向消费者 (DTC) 基因测试指南.
- 概述DTC遗传测试的关键考虑因素,包括获取,患者动机和结果披露.
- 确保DTC基因测试安全有效地融入患者护理途径.
主要方法:
- 基于对当前文献和专家共识的审查,制定立场陈述.
- 制定关于知情同意,风险效益评估和实验室认证的建议.
- 关于儿童和新生儿遗传检测的指导,强调临床背景和专业咨询.
主要成果:
- DTC遗传测试需要知情的个人意识到风险,好处,局限性,并同意处理数据.
- 儿童基因测试应在临床环境中进行,并得到家长的咨询和支持.
- 在临床决定之前,来自非认可实验室的结果需要在认可的诊断实验室得到确认.
结论:
- 医疗保健专业人员必须指导患者适当使用DTC遗传测试,优先考虑知情决策.
- 实验室的认证和结果的确认对于可靠的健康相关结果至关重要.
- 建议与医疗保健专业人员协商,以确定在线基因组测试的适用性和实用性.
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