A secular trend of the development of medicine in the 20th century was on the ways of strengthening the foundations of public health, formation of systems of affordable medical care. Human genome deciphering opens wide prospects for using the obtained data in medicine. In recent years commercial medical organizations have been developing genetic research and personal genomic testing services. The paper is devoted to the analysis of the importance of legal self-regulation in the field of genomic counseling in the Russian Federation. The authors investigate the prospects of the introduction of personalized medicine and limitations that arise today in one of the areas of the approach under consideration, namely: forecasting predisposition to diseases of mixed nature, which is related to the peculiarities of development of medical and demographic situation in the world. The question is raised about the need for broad population studies to verify the risk values for diseases with low genetic determinacy. The authors conclude that it is impossible to predict what medicine of the future will be, but the results of genome decryption and increasing availability of personal data represent a unique social phenomenon that should be developed within the legal framework. In the coming years, the debate on the role of legal mechanisms in the self-regulation of genetic research and genetic services will become increasingly important. At the international level, this discussion will be focused on the fundamental issue of respect for individual rights in the interpretation of the data received. As genetic advice evolves, the issue of responsibility for the information provided and the availability of national regulatory mechanisms within the framework of state regulation or self-regulated professional associations will become a key concern.
The development of contemporary world politics puts new demands on the diplomacy of the 21st century that has rapidly transformed into a multilevel and complex system. The remarkable features and, at the same time, imperatives of diplomatic relations include globalization and multipolarity, turbulence and the multifaceted nature of the foreign policy process, rapid accumulation and processing of information, integration and regionalization, increased national consciousness of States, extensive interaction with non-state actors of international law. In the context of this long-term trend, the most important place belongs to the new actors of the foreign policy process that find themselves in the formats of international dialogue often more competitive as compared with formal, classic mechanisms of diplomacy. Thus, currently, public, economic, digital, sports, regional, scientific, and electoral diplomacy are actively manifested as key trends. The institution of parliamentary diplomacy plays a significant role in the implementation of foreign policy goals and objectives. The uniqueness of this diplomatic course is manifested in the fact that it organically combines the features of official diplomacy and public diplomacy, as parliamentarians act as legitimate representatives of their countries, elected through democratic procedures and representing the interests of their constituents. In the Russian Federation, parliamentary diplomacy is recognized as conceptually important, demanded and promising format of global interaction, which has been repeatedly mentioned at high level of the State.
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).
The development of genomic research as an applied field requires the determination of their legal status in the Russian Federation. One of the directions could be the use of self-regulation in this area. The article discusses the features of Russian legislation and the recognition of the status of medical intervention for genomic research. International ethical standards are considered as the basis for this approach.
The paper deals with the problems of development of professional and ethical requirements in the field of information sharing about the progress and results of genetic research. The author substantiates the conclusion about the need to adopt such requirements at the level of self-regulatory organizations of geneticists These requirements should include the provisions on additional information, providing information about secondary and random test results in specific cases where the potential benefit for the patient is significant, but the additional load on the specialist is not too noticeable. The requirements should contain a list of specific genetic abnormalities and diseases related to random and secondary results of the study and reported regardless of the patient’s will, as well as the procedure and role of all involved parties (specialists and patients) in the process of disclosure of the results of the study.
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