Open AccessObtaining Informed Consent in Genomic and Genetic Studies
Author(s) -
A. A. Pestrikova
Publication year - 2021
Publication title -
aktualʹnye problemy rossijskogo prava
Language(s) - English
Resource type - Journals
eISSN - 2782-1862
pISSN - 1994-1471
DOI - 10.17803/1994-1471.2022.134.1.105-115
Subject(s) - informed consent , realm , process (computing) , engineering ethics , population , computer science , psychology , medicine , political science , law , alternative medicine , engineering , environmental health , pathology , operating system
The paper studies the process of obtaining informed consent in genomic and genetic research. The author considers some aspects of obtaining consent in the realm of the emergence of large-scale population studies and genomic databases that have challenged the traditional concepts of informed consent. The author examines foreign experience of obtaining informed consent as well as the concept considering informed consent as two main components, namely a dialogue or a process and form. Today due to the decoding of the genome and the possibility of re-identifying information, the information obtained in the course of scientific research and conducting genomic and genetic research can be disclosed. Therefore, the question is raised about the need for legal protection of such information and mechanisms for its protection. It is concluded that informed consent is no longer a single document tied to a particular study; it is becoming a dynamic process. The paper summarizes the latest theoretical and practical aspects of obtaining informed consent in genomic and genetic studies.