患者优先考虑在研究中履行尊重原则:来自修改后的Delphi研究的发现
Stephanie A Kraft1,2, Devan M Duenas3, Seema K Shah4,5
1Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children's Research Institute, 1900 Ninth Ave., M/S JMB-6, Seattle, WA, 98101, USA. stephanie.kraft@seattlechildrens.org.
BMC medical ethics
|September 22, 2023
概括
患者重视明确的研究信息,用于决策和善良的,非判断性的员工互动,以感到在基因组学研究中受到尊重. 这些方法提高了以患者为中心的研究伦理.
科学领域:
- 生物伦理学生物伦理学
- 基因组研究伦理学
- 以患者为中心的护理
背景情况:
- 研究的标准道德原则 尊重人缺乏患者的投入,特别是来自代表性不足的群体.
- 这种差距阻碍了包容性,以患者为中心的研究伦理学术奖学金和监督.
- 患者的观点对于推进伦理研究实践至关重要.
研究的目的:
- 确定患者所重视的实用方法,以传达基因组学研究中的尊重.
- 将患者的观点纳入研究伦理,特别是在社区环境中.
- 为包容性和以患者为中心的研究设计提供信息.
主要方法:
- 使用了3轮修改后的Delphi技术基于网络的调查.
- 参与者包括来自初级保健诊所的有癌症病史的英语患者.
- 患者在研究中评价和排名了与感觉受到尊重相关的项目.
主要成果:
- 提供研究信息以支持决策是高度优先考虑的 (平均排名为2.6).
- 与善良,耐心和缺乏判断力的研究人员的互动也得到了高度评价 (平均排名为2.8).
- 这些发现突出了在基因组学研究中传达尊重的关键要素.
结论:
- 知情同意和人际交互是参与者尊重的核心.
- 当直接同意或互动不可行时,需要采用替代方法.
- 进一步的研究应该探讨没有同意的研究的最佳实践和不同患者的观点.
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