As epigenetic studies become more common and lead to new insights into health and disease, the return of individual epigenetic results to research participants, in particular in large-scale epigenomic studies, will be of growing importance. Members of the International Human Epigenome Consortium (IHEC) Bioethics Workgroup considered the potential ethical, legal, and social issues (ELSI) involved in returning epigenetic research results and incidental findings in order to produce a set of 'Points-to-consider' (P-t-C) for the epigenetics research community. These P-t-C draw on existing guidance on the return of genetic research results, while also integrating the IHEC Bioethics Workgroup's ELSI research on and discussion of the issues associated with epigenetic data as well as the experience of a return of results pilot study by the Personal Genome Project UK (PGP-UK). Major challenges include how to determine the clinical validity and actionability of epigenetic results, and considerations related to environmental exposures and epigenetic marks, including circumstances warranting the sharing of results with family members and third parties. Interdisciplinary collaboration and good public communication regarding epigenetic risk will be important to advance the return of results framework for epigenetic science.

中文翻译：

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表观遗传学研究结果返回的注意事项。


随着表观遗传学研究变得越来越普遍，并带来对健康和疾病的新见解，将个体表观遗传学结果返回给研究参与者，特别是在大规模表观基因组研究中，将变得越来越重要。国际人类表观基因组联盟 (IHEC) 生物伦理工作组的成员考虑了返回表观遗传学研究结果和偶然发现所涉及的潜在伦理、法律和社会问题 (ELSI)，以产生一系列“考虑要点”(PtC) ）适用于表观遗传学研究界。这些 PtC 借鉴了有关基因研究结果返还的现有指南，同时还整合了 IHEC 生物伦理学工作组的 ELSI 对表观遗传数据相关问题的研究和讨论，以及个人基因组计划结果返还试点研究的经验。英国（PGP-英国）。主要挑战包括如何确定表观遗传结果的临床有效性和可操作性，以及与环境暴露和表观遗传标记相关的考虑因素，包括需要与家庭成员和第三方分享结果的情况。关于表观遗传风险的跨学科合作和良好的公众沟通对于推进表观遗传科学结果框架的回报非常重要。