Self-Regulation of Genomic Studies and the Problem of Correct Interpretation of Sequencing Results by Consumers

Abstract

The paper deals with the problems of interpretation of individual genome sequencing results as predictively probabilistic information. The authors have determined the main issues related to the legal area within the framework of self-regulatory organizations uniting subjects of professional activity (professional associations).The authors have analyzed the features of perception of risks (negative probability). Information under consideration is particularly complex for the consumer, as risk assessment is difficult for ordinary perception. The conclusion is made about the necessity of training all participants — geneticists, clinicians of various specialties, general practitioners, average medical staff and potential consumers of services.A fundamental conclusion is as follows: the integration of genomic research into the science and practice of the public health system can contribute to the improvement of public health, change of the lifestyle of the population implementing the recommendations of specialists aimed at correcting genetic risks identified by testing.When analyzing the main features of self-regulation of genomic studies, we come to the conclusion that in order to correct their lifestyle and health, the society faces a question of competent attitude to the results of genomic studies and their use. Moreover, this competence concerns not only consumers of genomic testing services, but also professionals obliged to correctly and accurately present the results of testing.The task of carrying out training activities and additional vocational education can be solved by a competent professional community based on self-regulatory organizations unifying subjects of professional activity (professional associations).