Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
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DOI：
10.1136/medethics-2016-103530
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发表时间：
2016-11
影响因子：
4.1
通讯作者：
7th of October 2015 Exeter Stakeholders Meeting
中科院分区：
文献类型：
--
作者：
Carrieri D;Bewshea C;Walker G;Ahmad T;Bowen W;Hall A;Kelly S;7th of October 2015 Exeter Stakeholders Meeting
目前关于同意个人参与基因组研究的指导方针多种多样。这给参与者和研究人员带来了问题，特别是为患者提供临床护理和研究的临床医生。一个由14名利益相关者组成的小组于2015年10月7日在埃克塞特举行会议，讨论临床基因组研究中出现的伦理问题和最佳实践，特别强调根据影响研究和临床实践的研究结果向研究参与者/患者返回结果的问题。工作组有意采用多学科的形式，以确保代表各种不同的意见。本报告概述了会议期间讨论的主要伦理问题、最佳实践领域和基于临床的基因组研究伦理原则。讨论中出现的主要观点是，伦理原则，而不是公式化的，应该指导研究人员/临床医生确定谁是主要的利益相关者咨询一个特定的项目，并纳入他们的声音/意见战略性地在整个生命周期的每个项目。我们相信，本报告中概述的原则和实践指南的组合可以有助于当前关于如何进行基于伦理的临床基因组研究的辩论。
Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research.
影响因子：
2.8
作者：
Edwards, Teresa;Cadigan, R. Jean;Henderson, Gail E.
通讯作者：
Henderson, Gail E.
影响因子：
13.4
作者：
Grady, Christine;Eckstein, Lisa;Wendler, David
通讯作者：
Wendler, David