探索个体与自我报告的遗传检测未满足需求的经验.
Kennedy Borle1, Larry D Lynd2, Jehannine Austin3
1Interdisciplinary Studies Program, Faculty of Graduate and Postdoctoral Studies, University of British Columbia, Vancouver, BC, Canada.
European journal of human genetics : EJHG
|March 28, 2025
概括
公众对基因测试需求的理解是复杂的,由临床和个人实用性驱动. 许多人对遗传咨询的需求尚未得到满足,即使他们不符合资助测试的条件,这影响了医疗信任.
科学领域:
- 遗传学 遗传学 是一个
- 医学社会学 医学社会学
- 生物伦理学生物伦理学
背景情况:
- 医疗保健系统根据临床效用来定义基因测试的需要.
- 公众对基因测试的必要性及其与临床实用性保持一致的看法尚不清楚.
研究的目的:
- 探索公众对基因测试的需要的理解.
- 调查公众的理解是否与医疗保健系统使用的临床实用性标准保持一致.
主要方法:
- 一项调查通过一个市场研究公司分发给加拿大的参与者.
- 有目的的抽样选择了自我报告需要基因测试的参与者进行半结构化虚拟访谈.
- 使用了解释性描述和反思性的专题分析.
主要成果:
- 参与者对遗传测试的感知需求受到临床实用性和个人意义的影响.
- 大多数参与者没有满足基于个人/家庭病史的资助测试的资格标准.
- 确定了未得到满足的信息和心理需求,这表明需要遗传咨询.
结论:
- 公众对基因测试的需求的理解是多方面的,包括临床和个人实用性.
- 遗传检测的公众期望和补偿标准之间的差异可能导致医疗不信任和不满.
- 在公众中,遗传咨询服务的需求仍未得到满足.
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