Biological Citizenship: from Patient Organizations to Consumer Genomics

 
PIIS023620070007671-5-1
DOI10.31857/S023620070007671-5
Publication type Article
Status Published
Authors
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
Journal nameChelovek
EditionVolume 30 Issue №6
Pages72-81
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.

Keywordsbiological citizenship, patient organizations, consumer genomics, autobiology, biosociality
Received12.12.2019
Publication date12.12.2019
Number of characters20195
Cite  
100 rub.
When subscribing to an article or issue, the user can download PDF, evaluate the publication or contact the author. Need to register.

Number of purchasers: 1, views: 1366

Readers community rating: votes 0

1. Brekke O.A., Sirnes T. Biosociality, Biocitizenship and the New Regime of Hope and Despair: Interpreting “Portraits of Hope” and the “Mehmet Case”. New Genetics and Society. 2011. Vol. 30, N 4. P. 347–374.

2. Flower M.J., Heath D. Micro-anatomo Politics: Mapping the Human Genome Project. Culture, Medicine and Psychiatry. 1993. Vol. 17, N 1. P. 27–41.

3. Harris A., Kelly S.E., Wyatt S. Autobiologies: Making Sense of Engagements with Healthcare Technologies. Eä: Journal of Medical Humanities and Social Studies of Science and Technology. 2015. Vol. 7, N 2. P. 71–86.

4. Heath D., Rapp R., Taussig K.S. Genetic Citizenship. A Companion to the Anthropology of Politics. Malden, MA: Blackwell Рubl., 2004. P. 152–167.

5. Jasanoff S., Kim S.H. Containing the Atom: Sociotechnical Imaginaries and Nuclear Power in the United States and South Korea. Minerva. 2009. Vol. 47, N 2. P. 119–146.

6. Lucivero F., Prainsack B. The Lifestylisation of Healthcare? “Consumer Genomics” and Mobile Health as Technologies for Healthy Lifestyle. Applied and Translational Genomics. 2015. Vol. 4. P. 44–49.

7. Petryna A. Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton Univ. Press, 2002.

8. Raz A., Amano Y., Timmermans S. Parents Like me: Biosociality and Lay Expertise in Self-help Groups of Parents of Screen-positive Newborns. New Genetics and Society. 2018. Vol. 37, N 2. P. 97–116.

9. Rose N., Novas C. Biological Citizenship. Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. London: Blackwell, 2005. P. 439–463.

10. Turrini M., Prainsack B. Beyond Clinical Utility: the Multiple Values of DTC Genetics. Applied and Translational Genomics. 2016. Vol. 8. P. 4–8.

Система Orphus

Loading...
Up