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“DIFFERENT TROUBLES ARE POSSIBLE ON THE WAY”: WHAT SPECIALISTS SAY ABOUT MEDICAL GENETICS IN RUSSIA (BASED ON RESULTS OF EXPERT INTERVIEWS) // ΠΡΑΞΗMΑ. Journal of Visual Semiotics. 2021. Issue 3 (29). P. 97-115

The article presents an analysis of expert interviews (N=13) based on the ideas of semiotic diagnostics. The interviews were conducted with Russian specialists in the fields of human genetics, medical genetics, and genomic medicine. The relevance of such diagnostics is due not only to the specificity of the above mentioned fields, which caused the emergence of new ideas about the role of the genome as a code and about the procedures of its editing, but also to the essence of social and humanitarian assessment of innovation, expressed in the finding of differences in the images of the present and the future, which all actors of the sphere of new technologies use. The aim of the study is to find out how experts look at the growth of the popularity of genetics, how they describe the expectations and requests from the government and society, what problems, in their opinion, they face in the development of scientific knowledge in Russia. In analyzing the data, the following main topics were highlighted: uncertainty; government support and regulation; the professional community problems; ethical limitations and responsibility to patients; expectations, fears and prejudices of people. The problem of uncertainty is one of the key issues for the current stage of knowledge about human genome. Experts note that it is impossible to foresee the long-term consequences of the use of genetic technologies, but this does not mean that research activities should be suspended. According to experts, the problem of uncertainty is solved through cautious and thoughtful actions of specialists, who are guided by the values of scientific knowledge and professional ethics. The government’s interest in the results of genetic research plays a controversial role. On the one hand, government support measures (such as financial, administrative) are being improved; on the other hand, excessive regulation of scientific activities appears, while many issues remain unresolved in terms of their legal regulation. In addition, experts have described problems that arise in the scientific and medical communities. Experts see the emergence in the scientific and organizational field of participants who monopolize resources through cooperation with the government as a process that will lead to restrictions on the free dissemination of scientific knowledge. There is also a problem in the academic community at the level of interaction with doctors who do not work with genetic data and are not ready to accept new diagnostic and treatment methods. Experts call ethical limitations and responsibility to patients the main principles of their work. In the experts’ statements, professional ethics is a working self-regulatory mechanism that warns against ill-considered actions. Finally, experts note that people are not ready to introduce genetic technologies into their everyday lives. This is partly due to the consumer attitude toward new services in the field of medical genetics, as far as people expect quick and clear answers and results from it; partly due to unfounded fears and myths, visualized in contemporary culture, about the danger of everything related to genetics. Thus, scientific knowledge about genes collides with different collective ideas, interests, fears, political and ideological attitudes, which ultimately affects scientists themselves.

Keywords: expert interviews, semiotic diagnostics, medical genetics, human genetics, genomic medicine, doctors, patients, government, ethics