Affiliation:
1. Togliatti State University
Abstract
The paper studies the process of obtaining informed consent in genomic and genetic research. The author considers some aspects of obtaining consent in the realm of the emergence of large-scale population studies and genomic databases that have challenged the traditional concepts of informed consent. The author examines foreign experience of obtaining informed consent as well as the concept considering informed consent as two main components, namely a dialogue or a process and form. Today due to the decoding of the genome and the possibility of re-identifying information, the information obtained in the course of scientific research and conducting genomic and genetic research can be disclosed. Therefore, the question is raised about the need for legal protection of such information and mechanisms for its protection. It is concluded that informed consent is no longer a single document tied to a particular study; it is becoming a dynamic process. The paper summarizes the latest theoretical and practical aspects of obtaining informed consent in genomic and genetic studies.
Publisher
Kutafin Moscow State Law University
Reference19 articles.
1. Berg Dzh. Govorit’ ili ne govorit’: etika i zakon o konfidencial’nosti medicinskoj informacii // Sovremennoe medicinskoe pravo v Rossii i za rubezhom : sb. nauch. tr. / RAN. INION. Centr social. nauch-inform. issled.; otd. pravovedeniya; IGP. Centr ekologo-pravovyh issled. ; Centr adm.-pravovyh issled. ; otv. red.: O. L. Dubovik, Yu. S. Pivovarov. — M. : INION, 2003. — 472 s.
2. Dubovik O. L. Zdorov’e cheloveka — vazhnyj ob«ekt pravotvorchestva i pravorealizacii // Sovremennoe medicinskoe pravo v Rossii i za rubezhom : sb. nauch. tr. / RAN. INION. Centr social. nauch-inform. issled.; otd. pravovedeniya; IGP. Centr ekologo-pravovyh issled.; Centr adm.-pravovyh issled. ; otv. red.: O. L. Dubovik, Yu. S. Pivovarov. — M. : INION, 2003. — S. 6–16.
3. Annas G. J. Rules for research on human genetic variation--lessons from Iceland // № Engl J Med. — 2000. — Jun 15. — 341 (24). — P. 30–33.
4. Barata P. C., Gucciardi E., Ahmad F., Stewart D. E. Cross-cultural perspectives on research participation and informed consent // Social Science & Medicine. — 2006. — 61 (2). — P. 479–490.
5. Bathe O. F., McGuire A. L. The ethical use of existing samples for genome research // Genet Med. — 2009. — 11. — P. 712–715.
Cited by
1 articles.
订阅此论文施引文献
订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献