International standards for genomic research self-regulation in the context of overcoming intersectoral legal conflictsregulation of professional activity of geneticists
( Pp. 194-199)
Varlen Maria Viktorovna
Bartsits Henri Lvovich
Mashkova Ksenia Viktorovna
Zenin Sergey Sergeyevich
Suvorov Georgiy Nikolayevich
More about authors
Varlen Maria Viktorovna
d-r yurid. nauk, docent. Dolzhnost: direktor instituta. Podrazdelenie: Institut aspirantury i doktorantury.
Moscow State Law University named after O.E.Kutafin Bartsits Henri Lvovich kand. yurid. nauk. Dolzhnost: prepodavatel. Podrazdelenie: kafedra konstitucionnogo i municipalnogo prava.
Moscow State Law University named after O.E.Kutafin Mashkova Ksenia Viktorovna kand. yurid. nauk. Dolzhnost: nachalnik upravleniya. Podrazdelenie: upravlenie mezhdunarodnogo sotrudnichestva
Moscow State Law University named after O.E.Kutafin Zenin Sergey Sergeyevich kand. yurid. nauk, docent. Dolzhnost: direktor, veduschiy nauchnyy sotrudnik. Podrazdelenie: kafedra teorii gosudarstva i prava, konstitucionnogo i administrativnogo prava
Moscow State Law University named after O.E.Kutafin, Academic Research Institute, South Ural State University (National Research University) Suvorov Georgiy Nikolayevich Dolzhnost: prorektor po obschim voprosam.
Federal Research and Clinical Center of Physical-Chemical Medicine of Federal Medical Biological Agency, Academy of Postgraduate Education
Moscow State Law University named after O.E.Kutafin Bartsits Henri Lvovich kand. yurid. nauk. Dolzhnost: prepodavatel. Podrazdelenie: kafedra konstitucionnogo i municipalnogo prava.
Moscow State Law University named after O.E.Kutafin Mashkova Ksenia Viktorovna kand. yurid. nauk. Dolzhnost: nachalnik upravleniya. Podrazdelenie: upravlenie mezhdunarodnogo sotrudnichestva
Moscow State Law University named after O.E.Kutafin Zenin Sergey Sergeyevich kand. yurid. nauk, docent. Dolzhnost: direktor, veduschiy nauchnyy sotrudnik. Podrazdelenie: kafedra teorii gosudarstva i prava, konstitucionnogo i administrativnogo prava
Moscow State Law University named after O.E.Kutafin, Academic Research Institute, South Ural State University (National Research University) Suvorov Georgiy Nikolayevich Dolzhnost: prorektor po obschim voprosam.
Federal Research and Clinical Center of Physical-Chemical Medicine of Federal Medical Biological Agency, Academy of Postgraduate Education
Abstract:
The article analyzes the international standards of self-regulation and the practice of their application in terms of specific aspects of genomic research. Based on the study, the authors identify priority areas for the application of opportunities for professional self-regulation. It justifies the conclusion that the development of professional guidance that determines the conditions and forms of access to information on genomic research from professional societies of geneticists is an effective way to overcome intersectoral collisions of the normative regulation of professional activity. The thesis that in the provision of genetic counseling services self-regulation opportunities take precedence over the traditional advantages of government regulation is also confirmed, since the legal status of consultants presupposes their independence from government bodies and commercial organizations that directly conduct genomic (laboratory) research.
How to Cite:
Varlen M.V., Bartsits H.L., Mashkova K.V., Zenin S.S., Suvorov G.N., (2019), INTERNATIONAL STANDARDS FOR GENOMIC RESEARCH SELF-REGULATION IN THE CONTEXT OF OVERCOMING INTERSECTORAL LEGAL CONFLICTSREGULATION OF PROFESSIONAL ACTIVITY OF GENETICISTS. Gaps in Russian Legislation, 5 => 194-199.
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Dedi Plaveti , Natalija. (2018). Genetic counselling and testing of susceptibility genes for therapeutic decision-making in breast cancer - an European consensus statement and expert recommendations // European Journal of Cancer. 106. 10.1016/j.ejca.2018.10.007.
Guoqiang Li, Yang Yu, Yong Fan, Congru Li, Xiaocui Xu, JialeiDuan, Rong Li, Xiangjin Kang, Xin Ma, Xuepeng Chen, YuwenKe, Jie Yan, Ying Lian, Ping Liu, Yue Zhao, Hongcui Zhao, Yaoyong Chen, Xiaofang Sun, Jianqiao Liu, JieQiao, Jiang Liu. Genome wide abnormal DNA methylome of human blastocyst in assisted reproductive technology // Journal of Genetics and Genomics. Volume 44. Issue 10. 2017. P. 475-481.
Joe Leigh Simpson, Robert W. Rebar, Sandra Ann Carson. Professional self-regulation for preimplantation genetic diagnosis: experience of the American Society for Reproductive Medicine and other professional societies // Fertility and Sterility. Volume 85. Issue 6. 2006. P. 1653-1660.
Luca Gianaroli, Catherine Racowsky, JoepGeraedts, Marcelle Cedars, AntonisMakrigiannakis, Roger A. Lobo. Best practices of ASRM and ESHRE: a journey through reproductive medicine // Fertility and Sterility. Volume 98. Issue 6. 2012. P. 1380-1394.
Michael E Talkowski, Heidi L Rehm. Introduction of genomics into prenatal diagnostics // The Lancet. Volume 393. Issue 10173. 2019. P. 719-721.
Quan Li, Kai Wang. InterVar: Clinical Interpretation of Genetic Variants by the 2015 ACMG-AMP Guidelines // The American Journal of Human Genetics. Volume 100. Issue 2. 2017. P. 267-280.
Reiser, Catherine Van Vreede, Victoria M. Petty, Elizabeth. (2019). Genetic counselor workforce generational diversity: Millennials to Baby Boomers // Journal of Genetic Counseling. 10.1002/jgc4.1107.
Sarah M. Nielsen, Shelly Cummings. The Role of Genetic Counselors on Healthcare Provider and Endocrinology Teams // Genetic Diagnosis of Endocrine Disorders (Second Edition). 2016. P. 397-408.
Somayya M. Sadek, Reda A. Ahmad, HythamAtia. Performance of the ESHRE/ESGE classification in differentiating anomalies of double uterine cavity in comparison with the ASRM classification // Middle East Fertility Society Journal. Volume 21. Issue 2. 2016. P. 75-81.
SunitaBijarnia-Mahay, Veronica Arora, RatnaDuaPuri, MeenaLall, RenuSaxena, Jyotsna Verma, Ashok Baijal, NanditaDimri, Nidhish Sharma, SudhaKohli, Sudhisha Dubey, Deepti Gupta, PushpaSaviour, Shruti Agarwal, Surbhi Mahajan, PreetiPaliwal, Zainab Mir, Sandeepika Sharma, I.C. Verma. The changing scenario in prenatal diagnosis of genetic disorders: Genetics to genomics // Current Medicine Research and Practice. Volume 8. Issue 6. 2018. P. 203-208.
Wen-Hua Kuo. Techno-politics of genomic nationalism: Tracing genomics and its use in drug regulation in Japan and Taiwan // Social Science Medicine. Volume 73. Issue 8. 2011. P. 1200-1207.
Yvonne Bombard, Kyle B. Brothers, Sara Fitzgerald-Butt, Nanibaa A. Garrison, Leila Jamal, Cynthia A. James, Gail P. Jarvik, Jennifer B. McCormick, Tanya N. Nelson, Kelly E. Ormond, Heidi L. Rehm, Julie Richer, Emmanuelle Souzeau, Jason L. Vassy, Jennifer K. Wagner, Howard P. Levy. The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results // The American Journal of Human Genetics. Volume 104. Issue 4. 2019. P. 578-595.
