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Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

机译：个体遗传结果对研究参与者的反馈：在欧洲可行吗？

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摘要

Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges. Materials and Methods: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach. Results: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process. Conclusions: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants.
机译：背景：越来越多的共识认为，应向研究参与者提供科学上可靠，分析有效且具有临床可行性的个体遗传研究结果。但是，欧洲研究项目的普遍做法是，出于多种原因，通常不会向研究参与者提供结果。本文报告了欧洲专家和学者的观点，这些专家是欧洲COST行动CHIP ME IS1303（通过公私合计的公民健康：公共卫生，市场和伦理学观点）的成员，对将个体遗传结果反馈给研究提出了挑战欧洲的参与者以及应对这些挑战的潜在策略。资料和方法：通过电子邮件调查和研讨会对COST行动成员进行了咨询。根据常规的内容分析方法，分析了咨询的结果。结果：在欧洲，缺少用于支持结果反馈的法律框架，专业准则以及财务，组织和人力资源。促进反馈过程的必要步骤包括：澄清结果反馈的法律要求，制定协调一致的欧洲最佳实践，促进跨学科和跨机构的合作，设计教育计划和具有成本效益的基于IT的平台，包括研究伦理委员会，并记录在案反馈过程的健康益处和风险。结论：需要在泛欧洲范围内进行协调的努力，以使研究参与者获得公平，科学合理和社会健壮的结果反馈。

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