Biological Citizenship: from Patient Organizations to Consumer Genomics

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.