Document Type
Article
Publication Date
5-23-2019
Identifier
DOI: 10.1186/s13073-019-0646-6; PMCID: PMC6533659
Abstract
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.
Journal Title
Genome Med
Volume
11
Issue
1
First Page
31
Last Page
31
MeSH Keywords
Bioethical Issues; Epigenesis, Genetic; Epigenomics; Genetic Testing; Humans; Incidental Findings; Practice Guidelines as Topic
Keywords
ELSI; Epigenetics; Incidental findings; Return of results
Recommended Citation
Dyke SOM, Saulnier KM, Dupras C, et al. Points-to-consider on the return of results in epigenetic research. Genome Med. 2019;11(1):31. Published 2019 May 23. doi:10.1186/s13073-019-0646-6
Comments
Grant support
his article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Publisher's Access: https://doi.org/10.1186/s13073-019-0646-6