Bioethics

With intriguing epigenetic findings being reported at accelerating speed in recent years, epigenetics research increasingly raises a number of profound social, political and ethical issues. These include questions on the sharing of epigenetic data and related privacy and confidentiality concerns, the danger of epigenetic discrimination, or the issue of returning epigenetic research results to research participants.

Consisting of a multidisciplinary group of researchers interested in the relationship between epigenetic science, ethics and policy, the IHEC Bioethics Working Group investigates current and emerging ethical concerns and implications of epigenetics research.

The present selection of publications and helpful documents elaborated by the group aims to highlight issues for consideration, and provide general guidance on the development of potential strategies for the return of epigenetic results or the establishment of data access agreements.

Helpful Documents

Suggested Policy

IHEC Points to Consider Epigenetic Results

Model Data Access Agreement

Harmonized Access Agreement

Selected Publications by Members of the Bioethics Working Group

Benefits and barriers in the design of harmonized access agreements for international data sharing
Author(s): Saulnier, K.M., Bujold, D., Dyke, S.O.M., Beck, S., Bourque, G., Joly, Y.

Reference: Sci Data 6, 297 (2019) doi:10.1038/s41597-019-0310-4
Points-to-consider on the return of results in epigenetic research
Author(s): Dyke, S. O., Saulnier, K. M., Dupras, C., Webster A. P., Maschke, K., Rothstein, M., Siebert, R., Walter, J., Beck, S., Pastinen, T., Joly, Y.

Reference: Genome Med (2019) 11: 31. doi: 10.1186/s13073-019-0646-6
Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination
Author(s): Dupras C., Song L., Saulnier K.M., Joly Y.

Reference: Front. Genet. 2018; 9:202. doi: 10.3389/fgene.2018.00202
Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards
Author(s): Saulnier K.M., Dupras C.

Reference: Am J Bioeth. 2017 Sep;17(9):58-60. doi: 10.1080/15265161.2017.1353182.
Epigenetics ELSI: Darker Than You Think?
Author(s): Joly Y., So D., Saulnier K.M., Dyke S.O.

Reference: Trends Genet. 2016 Oct;32(10):591-592. doi: 10.1016/j.tig.2016.07.001. Epub 2016 Jul 22.
Are Data Sharing and Privacy Protection Mutually Exclusive?
Author(s): Joly Y., Dyke S.O.M., Knoppers B.M., Pastinen T.

Reference: Cell. 2016 Nov 17;167(5):1150-1154. doi: 10.1016/j.cell.2016.11.004.
Epigenome data release: a participant-centered approach to privacy protection
Author(s): Dyke S.O., Cheung W.A., Joly Y., Ammerpohl O., Lutsik P., Rothstein M.A., Caron M., Busche S., Bourque G., Rönnblom L., Flicek P., Beck S., Hirst M., Stunnenberg H., Siebert R., Walter J., Pastinen T.

Reference: Genome Biol. 2015 Jul 17;16:142. doi: 10.1186/s13059-015-0723-0.
Risk of re-identification of epigenetic methylation data: a more nuanced response is needed
Author(s): Joly Y., Dyke S.O., Cheung W.A., Rothstein M.A., Pastinen T.

Reference: Clin Epigenetics. 2015 Apr 18;7:45. doi: 10.1186/s13148-015-0079-z. eCollection 2015.

In addition, an editorial addressing the activities of IHEC regarding the access and sharing of epigenomic data has been published in the March 2018 issue of Nature Methods. Providing views and statements of several IHEC workgroup chairs and co-chairs, the editorial does not only shed light on the achievements related to sharing data within IHEC to date, but also points out current challenges, especially when it comes to providing access to raw data.

Contact

Should you have any questions on any of the above mentioned documents, or wish to get in touch with the group, please contact the Bioethics Working Group Chairs.