A principled approach to bioethical regulation of genetic counseling: mapping the bioethical problems of genetic counseling and models for their solution

• Main Authors: Sergey Yu. Shevchenko, Ekaterina M. Shkomova
• Format: Article
• Language: English
• Published: Peoples’ Friendship University of Russia (RUDN University) 2021-12-01
• Series: RUDN Journal of Law
• Subjects: bioethics; principles; genetic data; disclosure; autonomy; beneficence
• Online Access: http://journals.rudn.ru/law/article/viewFile/26043/19212

Genetic counseling is a field of high-tech medicine, and its development gives rise to many ethical and legal problems associated primarily with the specifics of genetic data. The purpose of this article is to map the problems of bioethical regulation in genetic counseling, as well as approaches to their solution. To structure the problem field, a principlist approach was chosen. Main results: It is shown that bioethical problems of genetic counseling arise not only in connection with adherence to separate bioethical principles, but also in connection with the conflict between the principles of autonomy and beneficence. It is proposed to distinguish two dimensions of this conflict: 1. Individual, associated primarily with the exercise by a person of the right not to know about his/her hereditary risks; 2. Family, associated with the contradiction between the observance of medical secrecy (as part of autonomy) and the potential benefit from informing the patient's relatives about their possible hereditary risks. Conclusions: The models for resolving bioethical collisions highlight new aspects of meaning of autonomy. In the context of genetic counseling, it is possible to understand autonomy not as non-interference, but as an opportunity to control the disposal of genetic data. At the same time, in the context of regulating this disposal, the autonomy of the patient's family members can also be taken into account.