Problems of Legal Regulation of Diagnostics and Editing of the Human Genome in the Russian Federation

Abstract

Modern science has achieved very significant results in different areas. For ordinary people, it is gratifying that such achievements help to treat complex diseases, and the technologies themselves now reduce the cost of treatment unlike the most other factors affecting the medicine. One of these areas of scientific knowledge is genetic engineering that can change only separate parts of the human body or influence the transformation of the human body in general. This raises ethical issues that provoke a large number of disputes in the society. To overcome them, there is a need for a clear conceptual understanding of the problems associated with the diagnosis and editing of the human genome, on the basis of which an effective normative legal framework that will satisfy the interests of all participants of these legal relations should be developed.

Bioethical and Legal Issues in 3D Bioprinting

“…Requirements for obtaining consent from a donor for participation in research, as well as requirements for the processing and transfer of genetic information as a special category of personal data, are not defined in the existing legislation. Additionally, current legislation does not regulate the circulation of biological materials seized from donors for the purpose of conducting scientific research, does not provide guarantees of protection rights of donors, and does not stipulate the mandatory procedure for the preliminary approval of research by ethical committees[ 38 , 39 ].…”