Ethical Framework for Returning Epigenetic Research Results to Participants
The International Human Epigenome Consortium developed points-to-consider for returning individual epigenetic findings from large-scale studies. Key challenges include determining clinical validity of epigenetic marks, interpreting environmental exposure signals, and deciding when to share results with family members. The framework draws on lessons from the Personal Genome Project UK and adapts genetic return-of-results guidance for the emerging epigenetics field.
The original study
Points-to-consider on the return of results in epigenetic research.
- Authors
- Dyke SOM, Saulnier KM, Dupras C, Webster AP, Maschke K, Rothstein M, et al.
- Journal
- Genome medicine
- Type
- Journal Article, Research Support, Non-U.S. Gov't, Review
- PMID
- 31122281
Original 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.