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首页> 外文期刊>Emerging themes in epidemiology >Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar
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Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar

机译：纵向队列研究中的返回结果：1958年出生队列为例

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Population-based, prospective longitudinal cohort studies are considering the issues surrounding returning findings to individuals as a result of genomic and other medical research studies. While guidance is being developed for clinical settings, the process is less clear for those conducting longitudinal research. This paper discusses work conducted on behalf of The UK Cohort and Longitudinal Study Enhancement Resource programme (CLOSER) to examine consent requirements, process considerations and specific examples of potential findings in the context of the 1958 British Birth cohort. Beyond deciding which findings to return, there are questions of whether re-consent is needed and the possible impact on the study, how the feedback process will be managed, and what resources are needed to support that process. Recommendations are made for actions a cohort study should consider taking when making vital decisions regarding returning findings. Any decisions need to be context-specific, arrived at transparently, communicated clearly, and in the best interests of both the participants and the study.
机译：基于人群的前瞻性纵向队列研究正在考虑因基因组研究和其他医学研究而将发现返回给个人的问题。尽管正在为临床环境制定指南，但对于进行纵向研究的人员而言，该过程尚不清楚。本文讨论了代表英国队列和纵向研究增强资源计划（CLOSER）进行的工作，以检查同意要求，过程注意事项以及在1958年英国出生队列中潜在发现的特定示例。除了决定要返回哪些发现之外，还存在以下问题：是否需要重新同意以及对研究的可能影响，如何管理反馈过程以及需要哪些资源来支持该过程。建议针对队列研究在做出关于返回结果的重要决策时应考虑采取的行动。任何决定都需要针对具体情况，透明地达成，清楚地进行沟通，并符合参与者和研究的最大利益。

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