Points-to-consider on the return of results in epigenetic research

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 (IH...

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Bibliographic Details
Published in:Genome medicine 2019-05, Vol.11 (1), p.31-9, Article 31
Main Authors: Dyke, Stephanie O M, Saulnier, Katie M, Dupras, Charles, Webster, Amy P, Maschke, Karen, Rothstein, Mark, Siebert, Reiner, Walter, Jörn, Beck, Stephan, Pastinen, Tomi, Joly, Yann
Format: Article
Language:English
Subjects:
Bioethical Issues
Bioethics
Communication
Consortia
ELSI
Environmental toxicology
Epigenesis, Genetic
Epigenetic inheritance
Epigenetics
Epigenomics - ethics
Epigenomics - standards
Ethics
Gene expression
Genetic aspects
Genetic research
Genetic Testing - standards
Genetics
Genomes
Genomics
Health
Humans
Incidental Findings
Neurodegenerative diseases
Opinion
Practice Guidelines as Topic
Researchers
Return of results
Validity
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Summary: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.
ISSN:1756-994X
1756-994X
DOI:10.1186/s13073-019-0646-6