Abstract
The article analyzes key instruments of international legal regulation of preimplantation genetic diagnostics (PGD) procedure. The authors substantiate the conclusion that the requirements and principles formulated in these instruments can be successfully used for the development and improvement of the national legal framework aimed at regulating the PGA. The main directions of such use are defined. First, it is necessary to consider the existence of genetic predisposition to a particular disease or chromosomal disorder (the medical purpose) and provide a qualified consultation of a genetic scientist concerning the mechanism and consequences of diagnostics. Secondly, the legal regulation of genetic information obtained through the PGA requires an independent normative framework: determining the framework the law-maker must be guided by the fact that any intervention in the human genome aimed at modifying it may be carried out only for preventive, diagnostic or therapeutic purposes. In this regard, it is important to prohibit the PGA for social purposes (selection of embryo according to specific characteristics, establishment of compatibility between a donor and a recipient, looking beyond the prohibition to choose the embryo gender that is currently imposed under Russian legislation). Third, a separate regulatory framework is needed to resolve the problem of informing the patient about the results of examination: in addition to the right to be informed of the results of examination, it is also necessary to recognize the individual’s «right not to know,» particularly relevant to predictive genetic research.
Highlights
The authors substantiate the conclusion that the requirements and principles formulated in these instruments can be successfully used for the development and improvement of the national legal framework aimed at regulating the PGA
It is necessary to consider the existence of genetic predisposition to a particular disease or chromosomal disorder and provide a qualified consultation of a genetic scientist concerning the mechanism and consequences of diagnostics
The legal regulation of genetic information obtained through the PGA requires an independent normative framework: determining the framework the law-maker must be guided by the fact that any intervention in the human genome aimed at modifying it may be carried out only for preventive, diagnostic or therapeutic purposes
Summary
*** Бородина Мария Александровна, доктор медицинских наук, доцент, заведующий кафедрой неотложных состояний Академии постдипломного образования ФГБУ ФНКЦ ФМБА России borodinam2006@yandex.ru 125371, Россия, г. Отдельного нормативного правового регулирования требует правовой режим генетической информации, полученной в ходе ПГД: определяя таковой, законодатель должен руководствоваться тем, что любое вмешательство в геном человека, направленное на его модификацию, может быть осуществлено лишь в профилактических, диагностических или терапевтических целях.
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