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Genetic testing and informed consent for type I spinocerebellar ataxia, the most common hereditary disease in the Yakut population

Abstract

The article discusses the issues of informed consent for DNA testing at type 1 spinocerebellar ataxia, the most common hereditary disease with late onset of manifestation in the Yakut population. Different stages of obtaining informed consent in medical genetic counseling and in scientific research are described. The expediency of using the bioethical principle of non-disclosure of genetic information for a participant in a scientific study on the research of hereditary diseases with late manifestation is established.

About the Authors

S. K. Kononova

Russian Federation


O. G. Sidorova

Russian Federation


A. F. Platonov

Russian Federation


V. L. Izhevskaya

Russian Federation


E. K. Khusnutdinova

Russian Federation


S. A. Fedorova

Russian Federation


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Review

For citations:


Kononova S.K., Sidorova O.G., Platonov A.F., Izhevskaya V.L., Khusnutdinova E.K., Fedorova S.A. Genetic testing and informed consent for type I spinocerebellar ataxia, the most common hereditary disease in the Yakut population. Yakut Medical Journal. 2017;(3):27-30.

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ISSN 1813-1905 (Print)
ISSN 2312-1017 (Online)