Self-Regulation of Relations in Information-Sharing on the Progress and Results of Genetic Studies: Problems of Professional and Ethical Requirements Development
https://doi.org/10.17803/1729-5920.2019.151.6.131-142
Abstract
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.
Keywords
genetic research,
specialist,
genetics professional community,
self-regulation,
government regulation
Supporting agencies: The study is supported by the Russian Foundation for Basic Research (RFBR) as part of the research project № 18-29-14058.
About the Authors
K. V. Mashkova
Kutafin Moscow State Law University (MSAL)
Russian Federation
MASHKOVA Ksenia Viktorovna, PhD in Law, Head of the Department of International Cooperation
Russian Federation
MASHKOVA Ksenia Viktorovna, PhD in Law, Head of the Department of International Cooperation
M. V. Varlen
Kutafin Moscow State Law University (MSAL)
Russian Federation
VARLEN Maria Viktorovna, Doctor of Law, Docent, Director of the Institute of Postgraduate and Doctoral Studies
Russian Federation
VARLEN Maria Viktorovna, Doctor of Law, Docent, Director of the Institute of Postgraduate and Doctoral Studies
S. S. Zenin
Kutafin University Research Institute
Russian Federation
ZENIN Sergey Sergeevich, PhD in Law, Docent, Director
Russian Federation
ZENIN Sergey Sergeevich, PhD in Law, Docent, Director
A. L. Bartsits
Kutafin Moscow State Law University (MSAL)
Russian Federation
BARTSITS Anri Lvovich, PhD in Law, Lecturer of the Department of Constitutional and Municipal Law
Russian Federation
BARTSITS Anri Lvovich, PhD in Law, Lecturer of the Department of Constitutional and Municipal Law
G. N. Suvorov
Academy of Postgraduate Education of the Federal Clinical Research Centre of Russia’s Federal Medical-Biological Agency
Russian Federation
SUVOROV Georgiy Nikolaevich, PhD in Law, Vice-Rector for General Affairs
Russian Federation
SUVOROV Georgiy Nikolaevich, PhD in Law, Vice-Rector for General Affairs
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Review
For citations:
Mashkova K.V., Varlen M.V., Zenin S.S., Bartsits A.L., Suvorov G.N. Self-Regulation of Relations in Information-Sharing on the Progress and Results of Genetic Studies: Problems of Professional and Ethical Requirements Development. Lex Russica. 2019;(6):131-142. (In Russ.) https://doi.org/10.17803/1729-5920.2019.151.6.131-142
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