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

Model Data Access Agreement

 Selected Publications by Members of the Bioethics Working Group

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.

 Further Reading


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.