Medical-genetic counseling within the system of social factors: problems and search for solutions

Abstract

The subject of this research is ethical, socio-psychological, and legal problems arising in the process of medical-genetic counseling. It is demonstrated that medical-genetic counseling forms in the context of intertwinement of different social factors, and is a complex communicative process that involves scientists, medical doctors, patients, and their relatives in various forms of relationships. It is associated with myths and biases, as well as personal attitudes that distort the information about the diagnosis. It also transforms in the course of technological development. Description is given to the difficulties faced by the geneticist that affect the counseling process. The article demonstrates the peculiarities of family psychodynamics that determine the way of perception of genetic information. It is also indicated that genetic testing is aimed not only at personality of the patient, but may touch upon a wide range of relations: with relatives and friends, employers, and other interested parties. At the same time, the distribution of information on the risks of the disease may instigate discrimination against a person, stigmatization and elimination of a number of social opportunities, namely related to their professional activity. Genetic information pertains not only to physicality of an individual, but also to social body; affect the interests of the family and people living in a certain territory; bearers of common genetic information; as well as employers, insurers, etc. The conclusion is made that the process of genetic counseling based on the basic bioethical principles of autonomy, benevolence, justice, and informed consent requires additional interpretation. Based on consideration of incident A. Jolie and ethical analysis of the possibility of polygenic embryonic screening, the author reveals the peculiarities of perception of genetic information and its personal interpretation, which cause realization of the new types of responsibility in the process of genetic counseling, where the geneticist deals not with the establishment of diagnosis (fact), but with the likelihood of development of a particular pathology (prognosis).