DELAYED RISKS: HOW THE IDEA OF INFORMED CONSENT IS CHANGING UNDER THE INFLUENCE OF BIOBANKS
DOI: 10.23951/2312-7899-2021-3-39-54
Taking into account standpoints of visual semiotics, the concept “delayed risks” is proposed. The concept fixes the basis (1) for analyzing the situation caused by the development of new forms of biomedical research, primarily genetic, on the platform of biobanks; and (2) for searching for a form of warning the participant of the experiment about risks with no evidence of an immediate danger to health, but in the distant future potentially conflicting with the participant’s personal ideas about the good. The problematic situation is formed by the specificity of studies in biobanks, which technically do not allow requesting informed consent for each specific study. The article provides an overview of the emerging solutions to the problem. These solutions are associated with new forms of consent for participation in biomedical research – extended forms that are given for multiple studies, without informing the biobank donor about each specific biomedical research for which his/her bio-samples are used. However, the relevance of such forms of consent is controversial, stimulated by the precedents mentioned in the article, as well as hypothetical circumstances. The article provides arguments in favor of rethinking the actual health risk connected with the form of conventional informed consent as a delayed risk correlated with sociohumanitarian value intentions that are associated with the idea of the relationship between autonomy and welfare. The transition from a specific risk to a value risk delayed in time by its effect can be represented by public mechanisms. The actions of these mechanisms are controlled by the institutions of sociohumanitarian expert examinations and bioethics, which are responsible for legitimizing the change in the pragmatics of informed consent. But in this “buffer zone” between the interests of technoscience, which includes biobanks, and participants in biomedical experiments, there remains a place for the positions of paternalism. The potentials of visual semiotics make it possible to distinguish these positions (both in social optics and in individual optics). The “new ethic” serves to understand the direction of optical instrument development by establishing multiple angles for considering the configuration of delayed risks. Visualization of delayed risks is achievable on the basis of semiotic diagnostics of the value intentions of participants in biomedical experiments, which will make it possible for biobank donors to control the occurrence of contradictions between their beliefs and the use of their biomaterials, and, in a broad perspective, this serves as the basis for trust in the institution of biobanks. The need for visualization of delayed risks determines the emergence of new types of research with human participation (the transition from single biomedical studies in humans to multiple biomedical studies on human biomaterials), as well as the emergence of new types of risks: from specific health risks in a single study to the large-scale socio-humanitarian consequences of possible unethical research in the framework of multiple studies based on biobanks.
Keywords: delayed risks, visualization of delayed risks, semiotic diagnostics, biobanks, autonomy, informed consent, technoscience, autonomy
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Issue: 3, 2021
Series of issue: Issue 3
Rubric: ARTICLES
Pages: 39 — 54
Downloads: 743