scholarly journals Self-Regulation of Genomic Studies and Prospects of Personified Medicine

Lex Russica ◽  
2020 ◽  
pp. 54-61
Author(s):  
K. V. Mashkova ◽  
M. V. Varlen ◽  
A. Yu. Shirokov
Keyword(s):  
Self Regulation ◽  
Genetic Research ◽  
Personal Data ◽  
Professional Associations ◽  
Legal Framework ◽  
State Regulation ◽  
Personal Genomic ◽  
Demographic Situation ◽  
Genomic Studies

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.

scholarly journals Principles of Correlation Between Self-Regulation and State Legal Regulation of the Relations Related to Genetic Research: Modern Prospects

2019 ◽  
Vol 8 (2) ◽  
pp. 3850-3855
Keyword(s):  
Legal Status ◽  
Assisted Reproductive Technologies ◽  
Self Regulation ◽  
Genomic Medicine ◽  
Genetic Research ◽  
Professional Associations ◽  
Reproductive Technologies ◽  
Legal Regulation ◽  
State Regulation ◽  
National Standards

The principles of correlation between self-regulation and state legal regulation of the relations related to genetic research have been discussed in this article. Today the development of genetics and applied genomic medicine has a direct effect on legal relations on protecting the rights and legal interests of an individual. The main goal of the study is to research regulatory legal acts, judicial practice, and doctrinal sources aimed at determining the optimal correlation of the beginnings of self-regulation and state legal regulation of relations related to genetic research. When writing the article, the methods of collecting and studying singularities, the generalization methods, the scientific abstraction methods, as well as the method of inquiry into regularities have been used. This study is characterized by using the experience of foreign self-regulatory organizations and professional associations involved in genetics. In their study, for the first time, the authors have substantiated the conclusion that the model of the optimal correlation of state regulation and self-regulation of legal relations related to genetic research is based on the following principles: 1) informed consent for genetic research and protection of the confidentiality of the obtained information, 2) participation of self-regulating associations of medical geneticists in developing national standards for the quality of medical services in genetic research, as well as the requirements for medical organizations and medical employees who provide them, and 3) legalization of the legal status of a person providing counseling services in genetic research and in associated areas related to defining a strategy for the treatment of genetically determined diseases and the use of assisted reproductive technologies (genetic counselors). In the article it has also been stated that it is necessary to define the legal mode of protecting the information obtained during the genetic research depending on classifying such research as a certain specific category – diagnostic, pre-symptom or prognostic (carried out to assess the vulnerability of an individual to a specific disease). Third parties can only access the results of diagnostic genetic research.

scholarly journals National approaches towards implementation of artificial intelligence: Singapore’s experience

2020 ◽  
pp. 62-73
Author(s):  
Ella Gorian
Keyword(s):  
Artificial Intelligence ◽  
Private Sector ◽  
Self Regulation ◽  
National Level ◽  
Personal Data ◽  
Role Of Government ◽  
Normative Documents ◽  
Personal Data Protection ◽  
The Government

The object of this research is the relations in the area of implementation of artificial intelligence technologies. The subject of this research is the normative documents of Singapore that establish requirements towards development and application of artificial intelligence technologies. The article determines the peculiarities of Singaporean approach towards regulation of relations in the indicated sphere. Characteristic is given to the national initiative and circle of actors involved in the development and realization of normative provisions with regards to implementation of digital technologies. The author explores the aspects of private public partnership, defines the role of government in regulation of relation, as well as gives special attention to the question of ensuring personal data protection used by the artificial intelligence technologies. Positive practices that can be utilized in Russian strategy for the development of artificial intelligence are described. Singapore applies the self-regulation approach towards the processes of implementation of artificial intelligence technologies, defining the backbone role of the government, establishing common goals, and involving representative of private sector and general public. Moreover, the government acts as the guarantor of meeting the interests of private sector by creating an attractive investment regime and citizens, setting strict requirements with regards to data usage and control over the artificial intelligence technologies. A distinguishing feature of Singaporean approach consists in determination of the priority sectors of economy and instruments of ensuring systematicity in implementation of artificial intelligence. Singapore efficiently uses its demographic and economic peculiarities for proliferation of the technologies of artificial intelligence in Asian Region; the developed and successfully tested on the national level model of artificial intelligence management received worldwide recognition and application. Turning Singapore into the international center of artificial intelligence is also instigated by the improvement of legal regime with simultaneous facilitation in the sphere of intellectual property. These specificities should be taken into account by the Russian authors of national strategy for the development of artificial intelligence.

scholarly journals Personal Data Protection in Russia

2020 ◽  
pp. 95-113
Author(s):  
Alexander Gurkov
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Legal Framework ◽  
Fundamental Rights ◽  
Special Role ◽  
State Control ◽  
General Data Protection Regulation ◽  
Personal Data Protection ◽  
General Data

AbstractThis chapter considers the legal framework of data protection in Russia. The adoption of the Yarovaya laws, data localization requirement, and enactment of sovereign Runet regulations allowing for isolation of the internet in Russia paint a grim representation of state control over data flows in Russia. Upon closer examination, it can be seen that the development of data protection in Russia follows many of the steps taken at the EU level, although some EU measures violated fundamental rights and were invalidated. Specific rules in this sphere in Russia are similar to the European General Data Protection Regulation. This chapter shows the special role of Roskomnadzor in forming data protection regulations by construing vaguely defined rules of legislation.

Gout prevalence in the Hmong: a prime example of health disparity and the role of community-based genetic research

2021 ◽  
Author(s):  
Youssef M Roman ◽  
Kajua Lor ◽  
Txia Xiong ◽  
Kathleen Culhane-Pera ◽  
Robert J Straka
Keyword(s):  
Health Disparity ◽  
Genetic Research ◽  
The United States ◽  
Health Conditions ◽  
Community Based ◽  
Traditional Medicines ◽  
Increased Risk ◽  
Genomic Studies ◽  
History Of

Individuals of distinct Asian backgrounds are commonly aggregated as Asian, which could mask the differences in the etiology and prevalence of health conditions in the different Asian subgroups. The Hmong are a growing Asian subgroup in the United States with a higher prevalence of gout and gout-related comorbidities than non-Hmong. Genetic explorations in the Hmong suggest a higher prevalence of genetic polymorphisms associated with an increased risk of hyperuricemia and gout. History of immigration, acculturation, lifestyle factors, including dietary and social behavioral patterns, and the use of traditional medicines in the Hmong community may also increase the risk of developing gout and lead to poor gout management outcomes. Engaging minorities such as the Hmong population in biomedical research is a needed step to reduce the burden of health disparities within their respective communities, increase diversity in genomic studies, and accelerate the adoption of precision medicine to clinical practice.

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

Lex Russica ◽  
2020 ◽  
pp. 34-42
Author(s):  
M. V. Varlen ◽  
A. Yu. Shirokov ◽  
T. I. Shirokova
Keyword(s):  
Public Health ◽  
Self Regulation ◽  
Professional Community ◽  
Professional Associations ◽  
Genomic Research ◽  
Professional Activity ◽  
Individual Genome ◽  
Genetic Risks ◽  
Genomic Studies ◽  
Probability Information

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). 

scholarly journals Estado regulador = Regulatory state

2019 ◽  
pp. 249
Author(s):  
Laura Baamonde Gómez
Keyword(s):  
Welfare State ◽  
Self Regulation ◽  
State Regulation ◽  
The State ◽  
Regulatory State ◽  
Public Intervention ◽  
Division Of Powers ◽  
Role Of The State ◽  
General Economic Interest

Resumen: El objetivo es reflexionar acerca del concepto de Estado regulador, y cómo el rol del Estado como Estado social ha evolucionado en las últimas décadas a partir de los procesos de liberalización económica. La crisis del modelo del Estado prestacional ha dejado espacio a los agentes privados del mercado en régimen de competencia. El Estado, por su parte, se ha reservado el papel de regulador, garante o supervisor del funcionamiento eficiente de los mercados que requieren de una intervención pública más intensa para la satisfacción de las necesidades colectivas. En este marco, se abordará, asimismo, cómo esta nueva situación ha impactado en la tradicional división de poderes: protagonismo de las autoridades independientes, surgimiento de nuevos poderes normativos y dificultades para el control judicial de las decisiones de las agencias reguladoras. Finalmente, se propondrán algunas líneas de actuación para el futuro. Palabras clave: Estado regulador, Estado social, derecho regulatorio, liberalización, derecho de la competencia, servicio de interés económico general, autoridades independientes, autorregulación. Abstract: The aim is to reflect about the concept of regulatory state, and how the role of the state as welfare state has developed in the last decades since the first economic liberalization processes. The crisis of the provider state scheme, has let space for the market private agents in a competition regime. The State, for its part, has reserved for itself the authority of regulator, guarantor and supervisor of the efficient functioning of markets that demand more intensive public intervention for the collective needs satisfaction. Within this framework, this article will also address how this new situation has impacted on the traditional division of powers: role of independent authorities, emergence of new regulatory powers and difficulties for judicial review of the decisions of regulatory agencies. Finally, some lines of action for the future will be proposed. Keywords: regulatory state, welfare state, regulation, liberalization, competition law, service of general economic interest, independent authorities, self-regulation.

scholarly journals Mental Mechanisms of Psychological States Regulation

2021 ◽  
Vol 14 (4) ◽  
pp. 182-204
Author(s):  
A.O. Prokhorov
Keyword(s):  
Subjective Experience ◽  
Self Regulation ◽  
Mental States ◽  
State Regulation ◽  
Regulatory Process ◽  
The Self ◽  
Psychological State ◽  
Psychological States ◽  
Analytical Review

The article presents the analytical review of theories and studies of the psychological state regulation through the “self-processes — self-regulation” aspect. The main objective of the article is the analysis of concepts, mechanisms and the role of consciousness structures in the regulatory process. The theories of mental states self-regulation are analyzed: system-activity, system-functional and structures-functional. The specificity of each approach to the regulatory process is shown. It was found that the less developed area in presented theoretical constructions is the mental component of regulation: the contribution of the consciousness structures to the regulation of states, their significance and functions in the regulatory process, the specificity of the influence of individual structures on regulation and their synergy during self-regulation, etc. Review of the concepts of the mental states regulation’s mechanisms points the key role of the consciousness structures in the regulatory process. The consciousness structures are an integral part of the individual’s mental subjective experience. Subjective mental experience integrates meanings with categorical structures of consciousness, goal features, semantic structures of consciousness (personal meaning, values, semantic attitudes, etc.), reflection and its types, experiences, mental representations (imaginative characteristics), the self-system. The relationship between the consciousness structures in the process of mental states regulation is considered. It is shown that the integration of the consciousness components is aimed at the goal achieving — the regulation of the subject’s mental stateThe operational side of the regulatory process is associated with the actions of the subject, aimed at changing the state, feedback and time characteristics.

scholarly journals Modern Facets of Anti-Crisis Regulation of Monetary Sector and Financial Market

2021 ◽  
Vol 31 (1) ◽  
pp. 16-24
Author(s):  
Natalia Zvyagintseva
Keyword(s):  
Financial Market ◽  
Government Regulation ◽  
Self Regulation ◽  
State Regulation ◽  
Economic Systems ◽  
Specific Method ◽  
Scientific Schools ◽  
Regulatory Impact ◽  
Crisis Conditions

Many prior studies demonstrate a variety of views on the balance of government regulation and self-regulation in a market economy. The views of representatives of different economic schools have significantly changed in the course of time. The article examines the views of representatives of various schools of liberalism on the role of state and self-regulation in the development of financial and economic systems. The article assesses the contribution of Monetarist and Keynesian scientific schools to the formation of anti-crisis measures. A hypothesis about the greater importance of anti-crisis regulation, which is based on the postulates of Keynesianism, as compared to monetarism, was formulated. The tools of monetarism demonstrate insufficient usefulness for mitigating and eliminating the consequences of financial and economic crises. The article considers the features of state regulation of the economy in crisis conditions (crises of 2007-2009, 2020). Using the general-to-specific method, the article focuses on the regulation of the financial sector. In particular, measures of state regulation of the monetary sector and the financial market are summarized. An express analysis of some regulatory procedures in the field of the financial market and monetary regulation is carried out. It is concluded that a «new normality», as a consequence of the peculiarities of a state anti-crisis regulatory impact, is ambiguous.

scholarly journals Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules?

2011 ◽  
Vol 39 (3) ◽  
pp. 502-512 ◽  
Author(s):  
Sarah Knerr ◽  
Dawn Wayman ◽  
Vence L. Bonham
Keyword(s):  
Race And Ethnicity ◽  
Genetic Research ◽  
Research Process ◽  
Genomic Research ◽  
Genomic Studies ◽  
Research Advance ◽  
Race Ethnicity ◽  
The Relationship ◽  
Significant Health

As genetic and genomic research has progressed since the sequencing of the human genome, scientists have continued to struggle to understand the role of genetic and socio-cultural factors in racial and ethnic health disparities. Recognition that race and ethnicity correlate imperfectly with differences in allele frequency, environmental exposures, and significant health outcomes has made framing the relationship between genetic variation, race, ethnicity, and disease one of the most heated debates of the genome era. Because racial and ethnic identities reflect a complicated mix of social and genetic factors, critics have argued that use of racial and ethnic categories as analytical variables in biomedical research lacks rigor, leads to potentially dangerous stereotyping in medical practice, and sends harmful messages of innate racial difference to the broader public.Concerns over the current lack of diversity in human genetic and genomic studies have developed in parallel to discussions of the appropriate use of racial and ethnic categories during the research process.

scholarly journals Sustainable Management of Chemicals in Russia - Improving the Use of Chemicals and Minimizing the Danger for Nature and Human Beings

10.12737/6630 ◽  
2014 ◽  
Vol 3 (6) ◽  
pp. 3-11
Author(s):  
Тарасова ◽  
Natalya Tarasova ◽  
Макарова ◽  
A. Makarova ◽  
Аткиссон ◽  
...  
Keyword(s):  
Best Practices ◽  
Sustainable Management ◽  
Positive Impact ◽  
Self Regulation ◽  
Legal Framework ◽  
State Regulation ◽  
The State ◽  
Human Beings ◽  
Chemical Production ◽  
Management Of Chemicals

In this article we have analyzed the system of chemicals management in Russia. We have used the TSIS (“Trends & Indicators, Systems, Innovation, Strategy”) method as a tool for the analysis of the current state and for the elaboration of the concept of sustainable management of chemicals in Russia. The analysis showed that sustainable management of chemicals in Russia today might most effectively consist of: • The creation of the legal framework, including legislative support for many existing best practices; • Involvement of chemicals businesses and the general public in the process of promoting management, including creation of a culture of consumption and production of sustainable chemicals; • In addition to the state regulation, the implementation of business initiatives and the tools of self-regulation for business. We have found out that the organization of sustainable management of chemicals in Russia will require changes in chemical production (including internalizing the expenses now externalized to nature) and the consumption chains. The time to act is now, otherwise the planned growth in the production and consumption of chemicals is very likely to lead to catastrophic consequences both for the nature and for the human health. For the most part, best practices in sustainable management of chemicals (practices that could have a positive impact on the situation) are known in Russia. However, their effectiveness is low. The situation reflects the absence of a Russian legal framework on chemicals safety, and the current low motivation of business to adopt the best practices in the absence of clear signals from the state that it should be so. In order to create the system of sustainable management of chemicals, the state authorities should not only use the state regulation, but also actively promote and develop business initiatives and involve the society.

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