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Legal and ethical regulation of genetic research

Journal: RUDN Journal of Law (Vol.25, No. 1)

Publication Date:

Authors : ;

Page : 214-231

Keywords : genetic research; regulation; law; governance; bioethics; grand challenges; ethics committee;

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Abstract

The paper deals with the problems of genetic research regulation stemming from the peculiarities of this area of knowledge where research is practically inseparable from patient treatment, and cognitive practices are connected with the development and implementation of new devices, methodologies, and technologies to a much greater extent than in other areas of human activity. The issues of genetic research regulation are analyzed in the context of the concept suggested by Helga Nowotny and Giuseppe Testa distinguishing three human technologies of standardization through which control over the development of knowledge about genes is exercised. These three technologies are law, governance and bioethics, and the efficiency of their interaction is declared a necessary and sufficient condition for the successful development of molecular genetic sciences. The paper examines all the three technologies one by one, identifies the specifics and difficulties of their implementation in present-day Russian science, and assesses the genetic research prospects assuming the implementation of the aforementioned technologies. Particular attention is paid to institutionalization of ethics committees as an element of the genetic research regulation system. Substantiation is provided for the thesis that ethical committees should act as an institution combining rulemaking, management, and expert functions rather than as a structure capable of performing advisory and recommendatory functions only. The ability of the Russian society and state to withstand the grand challenges of our time is associated with the success in solving this problem.

Last modified: 2021-03-25 06:41:46