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Biological Citizenship: from Patient Organizations to Consumer Genomics
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Biological Citizenship: from Patient Organizations to Consumer Genomics
Annotation
PII
S023620070007671-5-
Publication type
Article
Status
Published
Authors
Elena G. Grebenshchikova 
Occupation: Head of the Center for Scientific Information and Research on Science, Education and Technology; Associate Professor, Department of Bioethics
Affiliation:
Institute of Scientific Information on Social Sciences of the Russian Academy of Sciences
Pirogov Russian National Research Medical University
Address: 51/21 Nakhimovsky Prosp., Moscow 117997, Russian Federation
Edition
Volume 30 Issue 6
Pages
72-81
Abstract

Understanding of patient activism organizations has had a great impact on the biological citizenship concept. Patients were united by a common “biological destiny” and a search for new forms of influence on research and health policy, which challenged the former format of relations between science, society and health care institutions and challenged the traditional gap between non-specialists and experts. Patient organizations have been able to assert the rights of citizens to solve their problems, create new channels of communication with the authorities and scientific institutions, and form an effective model of activity. ICT has created an additional impetus for interaction between clinicians, scientists, politicians, patients and their relatives. Online platforms for mutual patient assistance and opportunities for rapid exchange of knowledge and experience have led, among other, to the empowerment of patients and the inclusion of non-specialists in decision-making processes. In this context, the optics of biological citizenship is of interest for the analysis of consumer genomics, which is not related to any civilian project or initiative, but has a significant impact on trends in self-medicalization, autonomy and patient empowerment. Consumer genomics offers opportunities for independent decision-making and informed independence from professionals, influencing lifestyle choices and optimal strategies for “self-care”. However, the trends of individualization are opposed to the active expansion of ties with relatives on the basis of new genomic data and the involvement of strangers in the discussion of narrative descriptions of biological identity.

Keywords
biological citizenship, patient organizations, consumer genomics, autobiology, biosociality
Received
12.12.2019
Date of publication
12.12.2019
Number of purchasers
78
Views
1799
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0.0 (0 votes)
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S023620070007671-5-1 Дата внесения правок в статью - 25.11.2019
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References

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