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

Cards
Suggested Policy
Content

IHEC Points to Consider Epigenetic Results

Model Data Access Agreement
Content

Harmonized Access Agreement

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
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
Author(s)
Dupras C., Song L., Saulnier K.M., Joly Y.
Reference
Front. Genet. 2018; 9:202. doi: 10.3389/fgene.2018.00202
Author(s)
Saulnier K.M., Dupras C.
Reference
Am J Bioeth. 2017 Sep;17(9):58-60. doi: 10.1080/15265161.2017.1353182.
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.
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.
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.
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.

Author(s)
Alblas M., Schermer M., Vergouwe Y., Bolt I.
Reference
J. Pers. Med. 2019, 9, 14; doi:10.3390/jpm9010014
Author(s)
Chiapperino L., Panese F.
Reference
Sociol Health Illn. 2018;40(7):1233-49. doi: 10.1111/1467-9566.12779.
Author(s)
Fournier T., Poulain JP.
Reference
Qual Health Res. 2018;28(14):2195-207. doi: 10.1177/1049732318793417.
Author(s)
Greally JM.
Reference
Nat Rev Mol Cell Biol. 2018;19(4):207-8. doi: 10.1038/nrm.2017.135.
Author(s)
Hendrickx K., Van Hoyweghen I.
Reference
Front Genet. 2018;9:63. doi: 10.3389/fgene.2018.00063.
Author(s)
Hens K.
Reference
Int J Fem Approaches. 2017;10(1):103-18.
Author(s)
Lappé M.
Reference
BioSocieties. 2018;1745(8552).
Author(s)
Murray KB.
Reference
Can J Sociol. 2018;43(3):225-63.
Author(s)
Renzi C., Provencal N., Bassil KC., Evers K., Kihlbom U., Radford EJ., et al.
Reference
Prog Mol Biol Transl. 2018;158:299-323. doi: 10.1016/bs.pmbts.2018.04.011.
Author(s)
Schumacher A.
Reference
In: Moskalev A, Vaiserman AM, editors. Epigenetics of Aging and Longevity: Elsevier; 2018.
Author(s)
Shabani M., Borry P., Smeers I., Bekaert B.
Reference
Trends Genet. 2018;34(7):489-91. doi: 10.1016/j.tig.2018.03.006.
Author(s)
Valdez N.
Reference
Med Anthropol Q. 2018;32(3):425-42. doi: 10.1111/maq.12424.
Author(s)
Wastell D., White S.
Reference
In: Blinded by Science: The Social Implications of Epigenetics and Neuroscience. 2017:199-223. doi: 10.3399/bjgp18X696065.
Cards
Content

Contact

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