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.
Model Data 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.
Autonomy Challenges in Epigenetic Risk-Stratified Cancer Screening: How Can Patient Decision Aids Support Informed Consent?
Author(s): Alblas M., Schermer M., Vergouwe Y., Bolt I.Reference: J. Pers. Med. 2019, 9, 14; doi:10.3390/jpm9010014
Gendered imaginaries: situating knowledge of epigenetic programming of health
Author(s): Chiapperino L., Panese F.Reference: Sociol Health Illn. 2018;40(7):1233-49. doi: 10.1111/1467-9566.12779.
Eating According to One's Genes? Exploring the French Public's Understanding of and Reactions to Personalized Nutrition
Author(s): Fournier T., Poulain JP.Reference: Qual Health Res. 2018;28(14):2195-207. doi: 10.1177/1049732318793417.
A user's guide to the ambiguous word 'epigenetics'
Author(s): Greally JM.Reference: Nat Rev Mol Cell Biol. 2018;19(4):207-8. doi: 10.1038/nrm.2017.135.
An Epigenetic Prism to Norms and Values
Author(s): Hendrickx K., Van Hoyweghen I.Reference: Front Genet. 2018;9:63. doi: 10.3389/fgene.2018.00063.
The Ethics of Postponed Fatherhood
Author(s): Hens K.Reference: Int J Fem Approaches. 2017;10(1):103-18.
The paradox of care in behavioral epigenetics: Constructing early-life adversity in the lab
Author(s): Lappé M.Reference: BioSocieties. 2018;1745(8552).
Epigenetics and Politics in the Colonial Present
Author(s): Murray KB.Reference: Can J Sociol. 2018;43(3):225-63.
From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health
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.
Challenges and Future Directions
Author(s): Schumacher A.Reference: In: Moskalev A, Vaiserman AM, editors. Epigenetics of Aging and Longevity: Elsevier; 2018.
Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations
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.
The Redistribution of Reproductive Responsibility: On the Epigenetics of "Environment" in Prenatal Interventions
Author(s): Valdez N.Reference: Med Anthropol Q. 2018;32(3):425-42. doi: 10.1111/maq.12424.
Are we broken? Fixing people (or society) in the 21st century
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.
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.