Genetic Health Economy

Nazarov, Vladimir; Sisigina, Natalia

doi:10.18288/1994-5124-2018-6-188-213

Cited by 3 publications

(2 citation statements)

References 9 publications

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“…At the same time, they allow accumulating a vast mass of genetic data at private institutions, which jeopardizes information safety and crates a menace for information leakage (Rothstein, Knoppers & Harrell, 2016). All those pose questions concerning the legal regime of such information, the degrees of self-regulation and state interference in the processes of providing medical services in the field of genetics in order to secure the rights and legitimate interests of citizens (Thorogood, Dalpé & Knoppers, 2019).…”

Section: Self-regulation Of Genetic Research In Russian Non-public Ormentioning

confidence: 99%

“…It is worth noting that in current situation a patient should actively participate in monitoring their own health and selecting an optimal treatment scheme by using the latest genetic science achievements (Nazarov & Sisigina, 2018). At the same time, they should make well-elaborated decisions concerning gene therapy and/or genetic testing and realize their personal responsibility for decisions made.…”

Section: Self-regulation Of Genetic Research In Russian Non-public Ormentioning

confidence: 99%

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Self-Regulation of genetic studies in Russia: search for the optimal model

Alimov

Leshchenkov

2021

Vestn. Ross. univ. družby nar., Ser. Ûrid. nauki

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The article is devoted to the general analysis of self-regulatory practices of genetic research in Russia (conducted by public research institutions and commercial companies). Selfregulation is a special type of regulation, performed by organizations providing genetic research and their associations as well as by relevant professional and scientific community; it is regulated by local acts, agreements, memoranda, professional standards, codes of ethics, etc. and is aimed at establishing relationships in the field of organization, provision and use of results of genetic studies. Basically, selfregulation is especially critical in various aspects of organization and conducting genetic research in the worldwide perspective. The analysis provided by this article allows concluding that self-regulation practice in Russia is applied in several public research institutions, but rather fragmentarily. Moreover, the development of such form of regulation goes slowly. At the same time non-public genomic institutions are trying to evade any significant self-regulation of their activities; they do not provide for any expanded rules or standards of their practices (or they just confine themselves to references and general provisions which are not in line with the specifics of the mentioned activities). On the other hand, it is important to keep in mind that the current Russian legislation is full of gaps in terms of regulating genetic research process. Analysis of several websites of Russian private companies providing genetic profiling services revealed that those organizations almost never place complex information guides on their information portals; they neither provide the standards for performing genetic research in an intelligible form. The websites do not contain any information on possible risks or threats to health connected with application of medical procedures, while the issue of disclosure the gathered genomic information to third parties (e.g., enforcement agencies) is often ignored. More than that, there are hardly any published standards for conducting genomic research or documents on protecting patients rights, etc. Thus, we are forced to acknowledge that the institute of self-regulation in the field of genetic studies is not developed well enough in Russia. The current fragmented nature of legal regulation and selfregulation concerning genetic research may contribute to violation of rights and legitimate interests of patients in terms of confidentiality and safeguarding genetic information, gathered in the process of research. The state therefore should within the established goals of intensive genetic technological development provide all the necessary conditions (including of legal character). However, it is still not clear how the issues of legal regulation of status of genetic research participants, protection of genetic data, incentives for providing genetic research, etc. should be handled. We assume that one of the possible ways of tackling the aforementioned challenges is developing relevant complex legal regulation (including departmental acts) and/or investing the frontline public research institutions with special functions (i.e., within a special council, commission, or association). Such powers will contribute to regulating certain aspects of administering and conducting genetic research and using its results in the framework of legal regulation, which should be mandatory, including for non-public organizations, offering genetic services in the territory of the Russian Federation.

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Section: Self-regulation Of Genetic Research In Russian Non-public Ormentioning

confidence: 99%

Section: Self-regulation Of Genetic Research In Russian Non-public Ormentioning

confidence: 99%

Self-Regulation of genetic studies in Russia: search for the optimal model

Alimov

Leshchenkov

2021

Vestn. Ross. univ. družby nar., Ser. Ûrid. nauki

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Self-Regulation of Genomic Studies and Prospects of Personified Medicine

2020

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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.

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Genetic polymorphism associated with cervical cancer: a systematic review

Vinokurov

Миронов

Korchagin

et al. 2022

Journal of microbiology, epidemiology and immunobiology

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Introduction. Cervical cancer (CC) is one of the most common cancers in women. The CC etiological agent is the high-risk oncogenic human papillomavirus. In the meantime, not all women infected with this virus can develop cancer, thus suggesting that there is genetic predisposition to CC.The aim of the study was to analyze information about single nucleotide polymorphisms associated with the CC risk.Materials and methods. The performed search was focused on genome-wide association studies (GWAS) and meta-analyses conducted over the last 10 years and addressing the genetic risk of CC in the Caucasian population.Results. The most significant associations with CC were found in the following single nucleotide polymorphisms. Based on the GWAS data, they involve risk alleles rs138446575-T (OR = 2.39) TTC34; rs73728618-T (OR = 1.48) HLA-DQA1; rs3130196-C (OR = 1.4) HLA-DPB1; rs2516448-T (OR = 1.39 and 1.44) MICA and protective alleles rs9271898-A (OR = 0.64) and 9272143-C (OR = 0.65) between HLA-DRB1 and HLA-DQA1, rs55986091-A HLADQB1 (OR = 0.66). Based on the meta-analysis data, they involve genotype rs4646903-СС (OR = 4.65) CYP1A1 and protective alleles rs1801133-T (OR = 0.77) MTHFR, rs2333227-AA (OR = 0.57) MPO.Conclusion. The obtained data are critically important for development of laboratory techniques and reagent kits allowing for a personalized approach to identification of risk groups, which could benefit from compulsory vaccination and screening for pre-cancers of the cervix.

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Genetic Health Economy

Cited by 3 publications

References 9 publications

Self-Regulation of genetic studies in Russia: search for the optimal model

Self-Regulation of genetic studies in Russia: search for the optimal model

Self-Regulation of Genomic Studies and Prospects of Personified Medicine

Genetic polymorphism associated with cervical cancer: a systematic review

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