Points-to-consider on the return of results in epigenetic research
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 Conso...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2019-05-01
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| Series: | Genome Medicine |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s13073-019-0646-6 |
| _version_ | 1818960871902150656 |
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| author | Stephanie O. M. Dyke Katie M. Saulnier Charles Dupras Amy P. Webster Karen Maschke Mark Rothstein Reiner Siebert Jörn Walter Stephan Beck Tomi Pastinen Yann Joly |
| author_facet | Stephanie O. M. Dyke Katie M. Saulnier Charles Dupras Amy P. Webster Karen Maschke Mark Rothstein Reiner Siebert Jörn Walter Stephan Beck Tomi Pastinen Yann Joly |
| author_sort | Stephanie O. M. Dyke |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-20T12:04:26Z |
| format | Article |
| id | doaj.art-3fcc58747b254ada85d411965fa7bf4e |
| institution | Directory Open Access Journal |
| issn | 1756-994X |
| language | English |
| last_indexed | 2024-12-20T12:04:26Z |
| publishDate | 2019-05-01 |
| publisher | BMC |
| record_format | Article |
| series | Genome Medicine |
| spelling | doaj.art-3fcc58747b254ada85d411965fa7bf4e2022-12-21T19:41:25ZengBMCGenome Medicine1756-994X2019-05-011111910.1186/s13073-019-0646-6Points-to-consider on the return of results in epigenetic researchStephanie O. M. Dyke0Katie M. Saulnier1Charles Dupras2Amy P. Webster3Karen Maschke4Mark Rothstein5Reiner Siebert6Jörn Walter7Stephan Beck8Tomi Pastinen9Yann Joly10Centre of Genomics and Policy, Faculty of Medicine, McGill UniversityCentre of Genomics and Policy, Faculty of Medicine, McGill UniversityCentre of Genomics and Policy, Faculty of Medicine, McGill UniversityUCL Cancer Institute, University College LondonThe Hastings CenterInstitute for Bioethics, Health Policy and Law, University of Louisville School of MedicineInstitute of Human Genetics, Ulm University Medical CenterSaarland UniversityUCL Cancer Institute, University College LondonDepartment of Human Genetics, McGill University and Genome Quebec Innovation CentreCentre of Genomics and Policy, Faculty of Medicine, McGill UniversityAbstract 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.http://link.springer.com/article/10.1186/s13073-019-0646-6Return of resultsIncidental findingsEpigeneticsELSI |
| spellingShingle | Stephanie O. M. Dyke Katie M. Saulnier Charles Dupras Amy P. Webster Karen Maschke Mark Rothstein Reiner Siebert Jörn Walter Stephan Beck Tomi Pastinen Yann Joly Points-to-consider on the return of results in epigenetic research Genome Medicine Return of results Incidental findings Epigenetics ELSI |
| title | Points-to-consider on the return of results in epigenetic research |
| title_full | Points-to-consider on the return of results in epigenetic research |
| title_fullStr | Points-to-consider on the return of results in epigenetic research |
| title_full_unstemmed | Points-to-consider on the return of results in epigenetic research |
| title_short | Points-to-consider on the return of results in epigenetic research |
| title_sort | points to consider on the return of results in epigenetic research |
| topic | Return of results Incidental findings Epigenetics ELSI |
| url | http://link.springer.com/article/10.1186/s13073-019-0646-6 |
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