The Public Chamber of the Russian Federation Held Hearing on the Topic: «The Role of Genetic Technologies in the Prevention of Hereditary Diseases at the Stage of Pregnancy Planning: Issues of Accessibility and Information»

The Public Chamber of the Russian Federation held public hearing on the topic: «The role of genetic technologies in the prevention of hereditary diseases at the stage of pregnancy planning: issues of accessibility and information» on April 6, 2022. The round table was attended by state authorities, physician and medical community and representatives of non-profit organisations. 

The hearing was organised by the Commission of the Public Chamber of the Russian Federation on the protection of public health and the development of healthcare, the Scientific Research Institute for Obstetrics, Gynaecology and Reproductology named after D.O. Ott, the Russian Society of Medical Geneticists and the Charity Fund «Ostrova». The event was chaired by Lidia Mikheeva, the secretary of the Public Chamber of the Russian Federation. 

The participants of the round table discussed the technical readiness of our country for mass introduction of pre-conceptional screening and ethical aspects of pre-implantation genetic testing of embryos. 

The hearing was opened by the report of Gennady Sukhikh, Academician of RAS, Holder of an Advanced doctorate in Medical Sciences, Professor, Director of the National Medical Research Centre for Obstetrics, Gynaecology and Perinatology named after the Academician V.I. Kulakov of the Ministry of Healthcare of the Russian Federation. The report was about the latest achievements in reproductive medicine genetic technologies. 

Igor Kogan, Director of the Scientific Research Institute for Obstetrics, Gynaecology and Reproductology named after D.O. Ott, corresponding member of RAS, Professor, Holder of an Advanced Doctorate in Medical Sciences, spoke about pre-conceptional screening as a tool for the prevention of hereditary diseases and planning of healthy pregnancy. 

Vera Izhevskaya, Deputy Director for Scientific Work at the Research Centre for Medical Genetics, Holder of an Advanced Doctorate in Medical Sciences, made a presentation «Ethical aspects of genomic technologies for screening on heterozygous mutations leading to hereditary diseases», in which she noted a scope of ethical issues related to the maintenance of reproductive human rights for the use of genetic technologies «for the common weal». 

«If we are talking about heterozygous carrier screening in pre-implantation screening or more extended one, we should understand what we can offer families». 

The issues of the availability of pre-implantation diagnostics based on medical indications for families with a high risk of developing a sick child is particularly acute today. There are problems of public awareness, the need for high-quality medical genetic counselling as well as problems of ensuring voluntariness and the absence of coercion». 

Participants in the public hearing agreed that there was a need of raising awareness among the population, doctors and state authorities about the potential of modern reproductive and genetic technologies. 

According to the results of the round table the resolution will be prepared and sent to the State Duma of the Russian Federation, the Government of the Russian Federation and other interested structures.