Experts Discussed Ethical, Legal and Social Issues of Development of Medical Genetics at the Conference on Bioethics

On November 16, 2022, the All-Russian multimedia conference «Bioethics and Genetics: Challenges of XXI Century» was held at the international press-center of IIA «Russia Today».

The conference was organized by:

Association of medical geneticists
Research Centre for Medical Genetics
Russian society of medical geneticists
RNRMU named after academician N.I. Pirogov

with the support of the Ministry of Science and Higher Education of the Russian Federation.

The Conference «Bioethics and Genetics: Challenges of XXI Century» is devoted to a wide range of ethical, legal and social issues related to the development of genetics and molecular genetic technologies in the Russian Federation. Leading experts in the field of genetics, molecular biology, bioethics and law, together with the representatives of state authorities and patient organizations discussed the specifics of providing medical genetic assistance, issues of mass genetic examination and ethical problems of treatment of hereditary diseases.

The plenary session was moderated by Maria Vorontsova, PhD, leading researcher of the National Medical Research Centre for Endocrinology of the Ministry of Healthcare of the Russian Federation, member of the Presidium of the Russian Association for the promotion of science.

Principles of bioethics: respect for patient dignity and autonomy

Studies conducted among ICU patients show that adherence to the principles of bioethics directly affects their psychophysiological condition, in particular, patients require less sedation. This fact was emphasized by Elena Grebenshchikova, PhD, Holder of an Advanced Doctorate in Philosophic Sciences, Head of the department of bioethics of RNRMU named after the academician N.I. Pirogov, in her report. She recalled the basic principles of bioethics applied to medical genetics. In particular, the principle of solidarity is manifested in the fact that society is willing to bear the costs of patients with orphan diseases. Elena Grebenshchikova noted that the principles of respect for the dignity of the patient and his autonomy are now key in bioethics. The transition from a paternalistic model of patient-doctor interaction to a collegial model, where the person facing the disease is actively involved in the treatment and shares responsibility for its results, requires respect for the principle of patient autonomy. However, this should not lead to situations where the doctor takes the position of an observer.

“The principle of medical duty is important not only for the paternalistic model from which we are now departing. That is, we oppose the principle of autonomy - a doctor should not become an observer. We have an understanding that modern medicine deals with a person who is well aware of his illness, and therefore the principle of respect for autonomy needs to be discussed especially. Interpretation of this principle and the principle of respect for the dignity of the patient should be given in the context of modern realities”, - said Elena Grebenshchikova.

The moderator of the plenary session Maria Vorontsova stressed that today there is an urgent issue of adaptation of the borrowed principles of bioethics to modern Russian realities.

Independent Ethics Committees' oversight will not compromise their independence

Ethics committees are represented in Russia at various levels, from federal to the level of individual medical and scientific institutions. Today their activities are regulated not only by national legislation, but also by the legislation of the Eurasian Economic Union.

Oleg Grin, PhD, Director of the Scientific and Educational Centre of Law and Bioethics in the Field of Genomic Research and Application of Genetic Technologies, Moscow State Law University named after O.Kutafin, noted that harmonization of the legislation of the Eurasian Economic Union and national legislation is necessary today. In particular, Russian legislation did not contain a literal definition of the concept of an independent ethics committee, whereas Eurasian law did. Oleg Grin emphasized that the activities of independent ethical committees need to be monitored.

«It should be understood that the supervision does not infringe on the independence of the committees, it only ensures the legitimacy of their work», - said Oleg Grin.

“We have conducted a large analysis of the activities of independent ethical committees. They were now guided by various instruments, a situation that could lead one committee to endorse certain studies and another to prohibit them under other instruments. It is necessary to establish a list of basic documents on which independent ethical committees should rely in their activities”, - added Oleg Grin.

«A priest in an interdisciplinary team»

Alexander Tkachenko, chairman of the Board of the Charity Fund «The Circle of Well», founder of the first children’s hospice in Russia, archpriest, emphasized that quality medical care includes addressing issues related to spiritual needs.

“In this way, the clergyman becomes part of a multidisciplinary team, which must provide assistance. Qualitative help is unthinkable without this component. The patient’s right to know the truth about his condition makes it our responsibility to accompany the patient. The questions that we are asked often have no direct answer, but they require us to have a proper degree of compassion that will help the person to lean on and walk his way. Therefore, I think it is important to bring in the training of clergy of all faiths basics of bioethics”, - said Alexander Tkachenko.

The principle of «do no harm» can disturb not only treatment, but also diagnostics

The basic principle of medical ethics «do no harm» can be violated not only in the course of treatment, but even in the course of diagnostics. Sergey Kutsev, academician of the Russian Academy of Sciences, Director of the Research Centre for Medical Genetics, President of the Association of medical geneticists, voiced this problem today.

“Genetic research itself can lead to a situation where the rights of the child are violated. For example, testing will reveal a disease that manifests in adulthood, but the family may decide to abandon the child. However, it should be noted that today the principle of respect for the dignity of the patient is observed due to the fact that the Charity Fund «The Circle of Well» provides patients with expensive medications. Geneticists regularly face serious moral and ethical problems, and we need a regulation of actions that would address the moral and ethical aspects of the management of patients with hereditary diseases, preventive diagnostics, the use of new medications”, - said Sergey Kutsev.

Within the framework of the conference «Bioethics and Genetics: Challenges of XXI Century», a closed meeting of the working group on normative legal regulation in the field of genetic technologies was also held, including issues of genomic editing and bioethics under the Presidium of the Council for the implementation of the Federal Scientific and Technical Programme for the Development of Genetic Technologies for 2019-2030.

For more details follow the link: https://iz.ru/1426616/2022-11-16/uchenye-obsudili-voprosy-bioetiki-i-genetiki-na-forume-v-moskve