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.
Highlights
Epigenetics is a fast-growing field of research that is shedding light on the ways in which interactions with the environment lead to changes in gene expression [1]
As human epigenome mapping and epigenetic research continue to progress, with the potential to influence our understanding of environmental exposures, community health, and the health of future generations [8–10], determining which individual epigenetic research
The International Human Epigenome Consortium (IHEC) Bioethics Workgroup, an interdisciplinary group of researchers in science, ethics, policy, and the law, formed a Subgroup to anticipate and consider the ethical, legal, and social issues (ELSI) raised by the return of epigenetic research results. This Subgroup has produced a set of points-to-consider (P-t-C) for the community, which has been approved by the Bioethics Workgroup and IHEC Executive Committee
Summary
Epigenetics is a fast-growing field of research that is shedding light on the ways in which interactions with the environment lead to changes in gene expression [1]. The exposure occurred in all likelihood at the workplace Such a research result could carry a number of direct clinical implications for different ‘categories’ of individuals other than the participant, such as: 1) the farmer’s family (including non-genetically related family members such as adopted children) living near the contaminated site, as well as neighbors, as this information could influence decisions surrounding re-location away from the harmful exposure; 2) employees on the farm who may be at risk of epigenetic effects resulting from frequent exposure to the pesticide; and 3) these individuals’ future children, if there were a risk of possible transgenerational effects. A large multi-study survey found that providing a choice of different consent and data sharing models did not have a significant impact on willingness to participate in a biobank [96]
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