UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

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

Dyke, SOM; Saulnier, KM; Dupras, C; Webster, AP; Maschke, K; Rothstein, M; Siebert, R; ... Joly, Y; + view all (2019) Points-to-consider on the return of results in epigenetic research. Genome Medicine , 11 (1) , Article 31. 10.1186/s13073-019-0646-6. Green open access

[img]
Preview
Text
Beck_Points-to-consider on the return of results in epigenetic research_VoR.pdf - Published version

Download (395kB) | Preview

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.

Type: Article
Title: Points-to-consider on the return of results in epigenetic research
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s13073-019-0646-6
Publisher version: https://doi.org/10.1186/s13073-019-0646-6
Language: English
Additional information: © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/).
Keywords: ELSI, Epigenetics, Incidental findings, Return of results
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute > Research Department of Cancer Bio
URI: https://discovery.ucl.ac.uk/id/eprint/10075264
Downloads since deposit
15Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item