EN
Genome and epigenome editing technologies have been hailed as the most revolutionary discoveries in the natural and medical sciences. These achievements were confirmed by the 2020 Nobel Prize in chemistry. In contrast to genome editing, epigenetic regulation involves controlling the particular expression of a gene by modifying chromatin components without altering the genome nucleotide sequence. Despite many promising results and applications, the effects of epigenome editing interventions are not fully known. For example, potential irrevocable and transgenerational events are possible and might be heritable. Other concerns include the risk of using or misusing this technology in agriculture and, the military as well as using it with or without other treatments to alter human health and body. Despite ongoing debate and studies on human genome editing, especially germline, the discussion regarding human rights and the ethics of epigenome editing for different applications is at a relatively early stage and therefore sparse. Furthermore, in the context of possible infringements on human dignity and integrity, critical consideration is warranted as to whether the uses of these technologies are acceptable or should be banned in some countries. The first part of this article presents a short review of the epigenome versus genome editing field. Particular emphasis is placed on epigenome editing advances and threats, to draw open questions in epigenetic human rights status and regulation. The second part presents the analyses of international human rights law with other possible normative law acts that can influence the status of epigenome editing technologies, mostly in Europe. Their strengths and limitations are highlighted, to present raised open questions and gaps in the last part. The normative question is whether the existing international law regulations are sufficient to address a wide number of implications and to protect human rights in the face of this emerging technology. Furthermore, some gaps and flaws are pointed out in current regulation policy, as regards epigenetic editing. Accordingly, this study aims to present further guidance and questions by exploring the implications of the human rights framework for research and the application of epigenome editing. This article then lays down the landscape in the possible approaches of genome editing under human rights law – and argues that new regulations or updated international standards are needed, in combination with the institutional framework. Lastly, the concluding section situates this study’s findings within the relevant epigenome editing context.