scholarly journals THE MAIN APPROACHES TO THE LEGAL REGULATION OF THE PROCESSES OF STORAGE, ACCESS AND DATA PROTECTION OF GENOME SEQUENCING IN FOREIGN COUNTRIES

Issues of Law ◽  
2020 ◽  
Vol 20 (3) ◽  
pp. 87-96
Author(s):  
T.G. Suranova ◽  
◽  
S.S. Zenin ◽  
G.N. Suvorov ◽  
◽  
...  

The development of a general concept of legal regulation of access storage processes and data protection of genome-wide sequencing in Russia should be based on the principles and laws formed not only at the level of international documents, but also the experience of leading countries in this field. In view of the fact that there are no completely identical national legal systems, the absence of universal recipes for the reception of certain legal institutions should be recognized. Analysis of the practical implementation of various approaches and legal techniques used to solve problems in this area will help to avoid mistakes and form key points for creating an optimal model of rational lawmaking, suggest approaches, methods and techniques of regulatory impact that can later be used in domestic legal system

2020 ◽  
Vol 65 (9) ◽  
pp. 580-586
Author(s):  
T. G. Suranova ◽  
G. N. Suvorov ◽  
S. S. Zenin

The relevance of the study of the general principles and patterns of legal regulation of access storage processes and data protection of genome sequencing in foreign countries is determined by the need to develop a general concept of legal regulation of this type of activity in Russia. The purpose of this study is to develop the system-forming principles and patterns of access storage and data protection of genome sequencing in Russia. To achieve this goal, tasks were set and solved to identify and study the general principles and patterns of legal regulation of access storage processes and data protection of genome sequencing in foreign countries. The international documents regulating the features of regulation of access storage processes and data protection of genome-wide sequencing, the doctrinal sources of Great Britain, the USA, France, Israel, and Japan are studied. Methods used: general philosophical, general scientific, private scientific, special (structural-legal, comparative-legal, formal-legal). The general principles for the formation of the concept of legal regulation of genome sequencing in Russia are proposed. It was revealed that the creation of a universal regulatory regulator aimed at protecting the subject of personal data in view of the prevalence of public interests over private ones and the constant expansion of the scope of application of genetic data obtained as a result of genome-wide sequencing is the main problem in developing a legal regulation mechanism in the studied area. For the first time, the authors determine the basic principles for developing the concept of genome-wide sequencing in Russia, including: recognition of human rights and human dignity as the highest value, the necessity of researchers’ responsibility for the well-being of participants in view of the obtained research results, the mandatory informed consent of which should be voluntary, permanent, their right to get acquainted with the results obtained if it concerns their health, access to such information, ensuring the right to non-knowledge of research results and others.


2020 ◽  
Vol 65 (7) ◽  
pp. 458-463
Author(s):  
T. G. Suranova ◽  
G. N. Suvorov ◽  
S. S. Zenin

The relevance of the chosen topic is due to the need to resolve ethical problems that arise in the framework of legal regulation of genome-wide sequencing in Russia and foreign countries. The purpose of this research is to form ethical principles that should become a reference point for law - making in this area. In order to achieve this goal, we have solved the tasks of studying the normative legal acts of Russia and a number of foreign countries from an ethical point of view. General scientific, private scientific and special methods of scientific knowledge (system-structural, formal-legal) are used. In order to comply with the ethical boundaries of legal regulation, to store access and protect full-genome sequencing data in Russia and foreign countries, it is proposed to develop a set of restrictions that prevent possible discrimination on genetic grounds, to create the necessary conditions for the inadmissibility of disclosure of personalized data, disclosure of information about a genetic disease to the subject and his relatives, as well as the boundaries of editing the genome of a human embryo. For the first time, the authors substantiate the need to establish clear ethical boundaries in the implementation of genome-wide sequencing in Russia based on foreign experience.


Author(s):  
Yanis Arturovich Sekste ◽  
Anna Sergeevna Markevich

The subject of this research is the problems emerging in the process of establishment and development of the Institution of personal data protection in the Russian Federation. Special attention is turned to the comparison of Soviet and Western models of protection of private life and personal data. The authors used interdisciplinary approach, as comprehensive and coherent understanding of socio-legal institution of personal data protection in the Russian Federation is only possible in inseparable connection with examination of peculiarities of the key historical stages in legal regulation of private life of the citizen. After dissolution of the Soviet political and legal system, the primary task of Russian law consisted in development and legal formalization of the institution of protection of human and civil rights and freedoms, first and foremost by means of restricting invasion of privacy by the state and enjoyment of personal freedom. It is concluded that the peculiarities of development of the new Russian political and legal model significantly impacted the formation of the institution of personal data protection in the Russian Federation. The authors believe that the Russian legislator and competent government branches are not always capable to manage the entire information flow of personal data; therefore, one of the priority tasks in modern Russian society is the permanent analysis and constant monitoring of the development of information technologies.


2018 ◽  
Author(s):  
Михаил Геннадьевич Чепрасов ◽  
Юлия Станиславовна Лисачева ◽  
Евгения Дмитриевна Стрельникова

This article discusses the problematic aspects of the financial and legal regulation of innovation activity in the Russian Federation, as well as ways to solve them. A comparative analysis with foreign countries is presented. В данной статье рассмотрены проблемные аспекты финансово-правового регулирования инновационной деятельности в РФ, а также пути их решения. Представлен сравнительный анализ с зарубежными странами.


Author(s):  
M.V. Medvedev , G.N. Suvorov , S.S. Zenin et all

Objectives. The purpose of this study is to study the essence of ethical problems that arise in the field of genetic screening for prenatal diagnosis (PND) and determine possible ways to overcome them by legal means, taking into account the existing foreign experience. Materials and methods. Normative legal acts and doctrinal sources of Great Britain, Germany, Ireland, France and Switzerland are studied. Methods used: General philosophical, General scientific, private scientific, special (structural-legal, comparative-legal, formal-legal). Results. Ways to resolve ethical problems that arise or may arise in the future as a result of genetic screening for PND, which can be applied within the Russian legal system, are proposed. Conclusions. It is stated that most of the identified ethical problems are related to the lack of normative consolidation of the legal status of the fetus. It is presumed that the beginning of ethics should serve as the guide for legislation in this area. At the same time, it is emphasized that the legal regulation of genetic screening in PND should be flexible enough to optimally ensure the interests of all participants in these relationships. In addition, in this direction, it seems appropriate to refer to the experience of a number of foreign countries, whose legislation provides for fairly strict requirements in the field of PND.


Blood ◽  
2013 ◽  
Vol 121 (6) ◽  
pp. 898-904 ◽  
Author(s):  
Laura B. Ramsey ◽  
John C. Panetta ◽  
Colton Smith ◽  
Wenjian Yang ◽  
Yiping Fan ◽  
...  

Key Points A genome-wide study of the association of over 5 million SNPs with methotrexate clearance in 1279 patients treated with HDMTX in multicenter COG trials 9904 and 9905. We replicated the finding that inherited variations in SLCO1B1 are the most important genetic variations influencing methotrexate clearance.


Blood ◽  
2013 ◽  
Vol 121 (15) ◽  
pp. 2902-2913 ◽  
Author(s):  
Athina Mylona ◽  
Charlotte Andrieu-Soler ◽  
Supat Thongjuea ◽  
Andrea Martella ◽  
Eric Soler ◽  
...  

Key Points Lack of yolk-sac hematopoiesis in the Ldb1−/− mouse results from a decreased number of hemangioblasts and a differentiation block. Identification of genes and pathways regulated by Ldb1 in the hemangioblast reveals potential targets for early developmental manipulation.


Author(s):  
Oleksandr M. Bukhanevych ◽  
Serhii O. Kuznichenko ◽  
Anastasiia M. Mernyk

The study investigates the foreign experience of constitutional and legal regulation of restrictions on human rights in conditions of emergency and martial law in Macedonia, Armenia, Belarus, Moldova, Georgia, Latvia, Lithuania, Albania, Azerbaijan, which is relevantin modern conditions, based on the presence of local military conflicts, emergencies, or the possibility of their existence in many countries of the world. The purpose of this study was to analyse the text and content of the constitutions of foreign countries to clarify and explain the groundsfor restricting human and civil rights and freedoms in conditions of emergency and martial law. To achieve this purpose, the study employed a system of methods of scientific cognition, namely general scientific (analysis, synthesis), particular (comparative, quantitative and qualitative analysis, approximation), as well as special legal (formal legal, comparative legal) methods. The practical value of the study lies in the identification of four prevailing trends in the constitutions of foreign states to the procedure for determining the scope of restrictions on human rights under special regimes: 1) consolidation of an exhaustive list of rights and freedoms in the constitutions, which cannot be restricted during the period of emergency and martial law; 2) consolidation of an exhaustive list of rights and freedoms in the constitution, which can be restricted to protect human rights, the democratic structure of the state, public safety, the well-being of the population and morals; 3) combining the first two options for consolidating restrictions in the text of the constitutions; 4) consolidation of the possibility of limiting the rights and freedoms of the individual in the texts of constitutions by state authorities under special legal regimes in the interests of national security without specifying partiular rights and freedoms that may (or may not) be restricted


2020 ◽  
pp. 69-79
Author(s):  
Boris A. Levitanus ◽  
Sergey V. Strelnikov

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