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TECHNO-SCIENCE AND THE SCIENTIFIC ETHOS: THE OUTLINES OF ETHICS OF BIOBANKING THROUGH THE EYES OF THE RUSSIAN SCIENTIFIC COMMUNITY (BASED ON A SURVEY OF SPECIALISTS IN THE FIELD OF BIOMEDICINE AND RELATED RESEARCH ACTIVITIES) // ΠΡΑΞΗMΑ. Journal of Visual Semiotics. 2018. Issue 4 (18). P. 61-83

The paper proceeds from the visualization of the positions of scientists working in the field of high-tech biomedicine, and considers the transformations of science and scientific ethos basing on the example of biobanking development. It poses a question of a brand new social character of scientific practices generated by advanced technologies. Being in the process of technification and economic objectification, drastically changing, science is settling in the system of social practices from which it used to be absolutely separated before. In this respect, the paper addresses to biobanking as an example of a techno-scientific object that is gradually obtaining the status of the key component of biomedicine infrastructure and paramedical sciences development. The paper describes the special status of biobanks dealing with human biomaterials and having both biotechnological and biopolitical capacities that trigger an enormous controversy concerning ethical grounds for regulating biobanks as a techno-scientific branch and an emerging social institution. In this context, the paper focuses on the problem of responsibility of the biobank and related projects dealing with using human biomaterials and structuring relations with donors in the process of functioning. The paper emphasizes that the essential novelty of biobanks consists in their techno-scientific status combining social, technological and scientific components, and it naturally spreads upon the scientist’s ethos that cannot be called “classic” any more. So, the paper suggests paying special attention to the problem of the scientist’s responsibility and revision of the science ethos. Basing on the results of the survey conducted among the representatives of Russian biobanking (scientists, whose activities are linked to biobanking, developers and/or users of biobanks in research projects), the paper demonstrates some preliminary data showing the peculiarities of transformations of this kind. Designed by the authors of the paper in terms of the Lomonosov Moscow State University biobank project called “Noah’s Ark” (The National Depository Bank of Living Systems), the survey included both inquiry forms and feedback options that contributed to getting the most relevant answers from the respondents. As a result, the paper shows typical and non-typical attitudes representing the respondent audience views. Considering the survey, the paper concentrates on revealing the professional community attitude towards both the current status and perspectives of biobanking development in Russia. The qualitative research represented in the paper focuses on possible aims, top targets, usage potential, management issues, social risks and ethical regulations of biobanking.

Keywords: scientific ethos, status of scientist, ethics of scientific research, techno-science, biobank, biobanking, sociology of science

SELF-TRACKING AS A SKETCH OF DIGITAL MEDICINE AND AN OBJECT OF EPISTEMIC ANALYSIS // ΠΡΑΞΗMΑ. Journal of Visual Semiotics. 2021. Issue 3 (29). P. 55-82

Self-tracking is a phenomenon of digital medicine that allows highlighting trends in the development of medicine as a science and a health care sector. Self-tracking as a sketch is an opportunity to see the features of a future picture already in a gesture drawing. Self-tracking is considered as a social practice of using digital technologies to collect, monitor and evaluate significant medical quantitative parameters of the bodily state and mental status. At the same time, self-tracking is one of the manifestations of the modern phenomenon of corporeality quantification. Against the background of the growing importance of self-control in medicine of the 21st century, digitalization is changing the practice of monitoring bodily states from the perspective of managing them. However, the key subjects of medicine are not uniformly related to self-tracking. Special devices and applications for self-tracking purposes have a wide range of applications, and the practice of using them for self-monitoring generates many contradictions and becomes the subject of analysis in various subject areas, from medicine to philosophy. An epistemic analysis of self-tracking is associated with the consideration of the status of knowledge that arises within the framework of digital self-monitoring and self-control. The result of self-tracking is a data pool characterized by such features as: connection with the individual body and the world of a specific person acting as a producer of knowledge; practical focus on self-management of the subject’s daily behavior; objectivity ascribed by the subject, which becomes the basis for legitimizing changes in behavior. Consideration of self-tracking in the context of civic science allows us to record the formation of new options for conceptualizing the relationship between science and society. Self-tracking has the features of a personal science and requires clarification of real and practical forms of interaction between civil and institutionalized science, as well as an assessment of the prospects for dialogue between them. The conditions for the existence of knowledge that arise as a result of self-tracking are associated with several basic positions. First, it is an analysis of the personal epistemic goals of the self-tracking subject, which vary widely from pragmatic medical indications to self-knowledge: a complex interweaving of goal-setting. With the self-identification of a person using digital technologies of self-examination and self-control, the basis of self-determination is replaced: from self-awareness to a quantitative determination that depends on the social, axiological context of measurement modes. The predominance of visuality with “quantified self” nevertheless leaves room for a departure from reductionism and a high level of understanding of the integrity of the subject in a wide cultural and social context. This actualizes the task of an adequate methodology and conceptual apparatus for combining quantitative and qualitative parameters. The knowledge that has become the result of self-tracking for the subject can be a factor and manifestation of a change in the model of communication between a doctor and a patient in the direction of antipaternalism when approving the interpretation of health as a management project. In the context of “opportunities-limitations”, self-tracking makes it possible to clearly record the request for conceptualizing the relationship between individual responsibility and the role of the state and society in matters of protecting individual and public health. Social practices of self-tracking are associated with an increased participation of subjects in obtaining meaningful medical information, which, on the one hand, opens up opportunities for self-control and management of their own health, and, on the other hand, leads to the emergence of additional channels for managing human behavior with an emphasis on social normativity. Gamification, visualization, involvement in target social groups increase the attractiveness of self-tracking practices, which in turn blurs the line between the private and the public. The inclusion of medical self-monitoring in the economic sphere leads to the emergence of the “digital labor” phenomenon. At the moment, arguments in favor of the development of digital medicine technologies, as well as concerns and fears, lie in the plane of potential benefits and potential risks; there is no sufficient empirical basis for generalizations; the positions of various stakeholders of the process are not explicitly indicated. A critical attitude to the development of self-control technologies is based on arguments about the impossibility of achieving the stated goals through self-tracking, about the availability of alternatives to digital self-control, about the threat to those fundamental values that underlie the bioethical regulation of biomedicine in the late 20th – early 21st centuries. The social practice of self-tracking is ahead of its epistemic analysis, which should include not only the analysis of the status of knowledge in the light of the declared and achieved goals, the means used for this and the real spheres of application of the results of self-description and self-control. Conceptualization should also be aimed at identifying the conditions for the possibility of obtaining and applying knowledge in a wide social context that arises during the medicalization of all spheres of society.

Keywords: philosophy of medicine, digital medicine, digital healthcare, digital health, self-tracking, mobile healthcare

DIGITAL BIOETHICS AS DIGITAL HEALTH ETHICS // ΠΡΑΞΗMΑ. Journal of Visual Semiotics. 2023. Issue 1 (35). P. 9-29

Personalized medicine development includes an active use of digital products and tools for diagnosing, treating and monitoring health. This phenomenon generates such digital-related concepts as “digital health,” “Digital Medicine,” “Digital Therapeutics,” or “Digital Wellness.” Digital health includes tele- and algorithmic medicine, e-health, and mobile health. Bioethics represents a research area and social institution. Bioethics should increase the ethical support for bioethical choice subjects in the context of the social practices’ transformation in personal and public health. The article highlights the features of the subject and methodology interpretation; indicates the prospects for the development of digital bioethics. This article describes digital bioethics as digital health ethics. This interpretation differs from the understanding of digital bioethics as a field of using digital methods of empirical research. The research subject is social relations regarding confidentiality, truthfulness, trust, justice, and accountability. The entire social system is involved in the bioethical analysis, since the ethical issues of digital health are considered in a wide context of social dynamics, economic interactions, and political governance. Thus, digital bioethics is close to biopolitics. Digital bioethics uses several approaches. It refers to certain ethical theories to evaluate the results of the digital health technologies’ use. It considers different digital health-related situations through bioethical principles. It also describes the ethical harm in the digital technologies’ creation and integration in healthcare. Ethical issues are related to the social mechanisms in which they are created and used. The moral dilemmas’ resolution is seen as power relations’ manifestation. Digital bioethics analyzes the policy of various healthcare actors, the dependence of digital health on communication infrastructure and economic influence. Digital bioethics proposes to address treatment depersonalization and anonymization which represent the consequences of health and disease datafication. Digital bioethics complements empirical description of digital health practices and public health policies. On the one hand, digital bioethics is a field of digital methods’ application for studying bioethical discourse in the digital space. Thus, digital bioethics digitizes analog methods and additionally develops digital analysis methods. On the other hand, digital bioethics is defined as digital health ethics, and does not pay attention to the development of its own research methods. These two interpretations are interconnected. According to digital bioethics, ethically acceptable futures are the basis for management decisions in healthcare. This fact enhances a comprehensive transdisciplinary description of digital ethical foundations and ethical regulation mechanisms. Bioethics, algoretics, artificial intelligence ethics, engineering ethics, business ethics, political ethics, and other manifestations of applied ethics can be combined into a unique research complex and form a common mechanism for social and humanitarian innovations’ expertise. Prospects for the digital bioethics’ development should be comprehended through the empirical and normative traditions, the correlation of analog and digital discourses of bioethics, as well as the peculiarities of the bioethical institutions’ functioning in the digital space.

Keywords: ethics, bioethics, digital bioethics, social and humanitarian expert appraisal, digital healthcare, digital health