Orphan Diseases in the Focus of Knowledge of Non-рrofessionals: To the Problem of the Influence of Patient Experience on the Development of Medicine

Occupation: Leading Researcher, Head of the Department of Humanitarian Expertise and Bioethics
Affiliation: RAS Institute of Philosophy
Address: 12/1 Goncharnaya Str., Moscow 109240, Russian Federation

Sergei V. Popov

Affiliation: Diplomatic Academy of the Ministry of Foreign Affairs of the Russian Federation
Address: 53/2, build.1 Ostozhenka Str., Moscow 119021, Russian Federation

Journal name

Chelovek

Edition

Volume 33 Issue 6

Pages

7-25

Abstract

The problem of self-organization of patient communities and parental self-help groups created to combat orphan diseases is considered, and in this context, the process of forming alternative research practices to academic science and obtaining the necessary knowledge about orphan diseases is studied. On the example of a number of incidents, it was shown that the formation of special epistemological regimes, where non-professionals play an active role in the formation of a body of knowledge about rare diseases, is realized in the following trends: 1) the scientific community by creating new forms of science management; 2) the demand to speed up the conduct of experimental scientific research, regardless of the established medical ethos (the phenomenon of false hope) and normative practices that control the development of science; 3) an effort, without conflicting with medical science, to create alternative sources of knowledge. The development of special epistemological regimes, in which both scientists and non-professionals are involved in the process of obtaining knowledge, is built on the principles of solidarity and convergence of efforts, and is associated with the democratization of the process of obtaining knowledge.

Keywords

orphan diseases, convergence of efforts, self-organization, biosocialization, science ethos, patient organizations, garage science

Received

20.12.2022

Publication date

28.12.2022

Number of characters

35946

Cite

GOST	Popova O., Popov S. Orphan Diseases in the Focus of Knowledge of Non-рrofessionals: To the Problem of the Influence of Patient Experience on the Development of Medicine // Chelovek – 2022. – V. 33. – Issue 6 C. 7-25 [Electronic resource]. URL: https://chelovek-journal.ru/S023620070023376-0-1 (circulation date: 05.05.2024). DOI: 10.31857/S023620070023376-0
MLA	Popova, Olga V, Popov, Sergei V "Orphan Diseases in the Focus of Knowledge of Non-рrofessionals: To the Problem of the Influence of Patient Experience on the Development of Medicine." Chelovek 33.6 (2022):7-25. DOI: 10.31857/S023620070023376-0
APA	Popova O., Popov S. (2022). Orphan Diseases in the Focus of Knowledge of Non-рrofessionals: To the Problem of the Influence of Patient Experience on the Development of Medicine. Chelovek 33(6), pp.7-25 DOI: 10.31857/S023620070023376-0

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: 0, views: 267

Readers community rating: votes 0

1. Artamonov D.S., Tikhonova S.V. Garazh istorii: tsifrovoi povorot “nezavisimykh istoricheskikh issledovanii” [Garage of History: The Digital Turn of “Independent Historical Research”]. Dialog so vremenem. 2020. Iss. 72. P. 237–254.

2. Magomedova Yu.S. Predposylki imaginativnogo povorota v neopragmaticheskoi etike [Preconditions for the Imaginative Turn in Neopragmatic Ethics]. Idei i idealy. 2021. Vol. 13, N 2, ch. 2. P. 445–457.

3. Popova O.V. Chelovek kak artefakt biotekhnologiy [Man as an Artifact of Biotechnology]. Moscow: Kanon+ Publ., 2017.

4. Rabinou P. Sotsiobiologiya i biosotsial'nost' [Sociobiology and Biosociality], transl. from Engl. by G.B. Yudin. Chelovek. 2019. Vol. 30, N 6. P. 8–26.

5. Terri Sh. Nauka ne ponimala redkoye zabolevaniye moikh detey, poka ya ne reshila issledovat' yego sama [Science Did Not Understand My Children's Rare Disease Until I Decided to Investigate It Myself]. November 2016 [Electronic resource]. URL: https://www.Ted.Com/talks/sharon_terry_science_didn_t_ understand_my_kids_rare_disease_until_i_decided_to_study_it/transcript?Language=ru (date of access: 27.08.2022).

6. Tishchenko P.D. Bioetika kak forma sotsial'no raspredelennogo proizvodstva znaniya [Bioethics as a Form of Socially Distributed Production of Knowledge]. Znanie. Ponimanie. Umenie. 2010. N 2. P. 71–78.

7. Teylor CH. Chto takoe sotsial'noe voobrazhaemoe? [What is the Social Imaginary?]. Neprikosnovennyi zapas. Debaty o politike i kul'ture. 2010. N 1(69). Р. 19–26.

8. Faygenbaum D. V pogone za zhizn'yu. Istoriya vracha, operedivshego smert' i spasshego sebya i drugikh ot neizlechimoi bolezni [In Pursuit of Life. The Story of a Doctor Who Was Ahead of Death and Saved Himself and Others from an Incurable Disease], transl. from Engl. by V. Gorokhov; ed. by A. Sakerin. Moscow: Mann, Ivanov i Ferber Publ., 2020.

9. Shamansurova K.E. Osobennosti Onkoruneta. Internet kak znachimyi drugoi dlya soobshchestva onkologicheskikh patsientov [Features of Oncorunet. The Internet as a Significant Other for the Community of Cancer Patients]. Tsifrovoe obshchestvo kak kul'turno-istoricheskii kontekst razvitiya cheloveka: sbornik nauchnykh statei [Digital Society as a Cultural and Historical Context of Human Development: Collection of Scientific Articles], ed. by R.V. Еrshova. Kolomna: Gosudarstvennyi sotsial'no-gumanitarnyi universitet, 2018. P. 422–427.

10. Bieler P., Niewöhner J. Universal Biology, Local Society? Notes from Anthropology. The Palgrave Handbook of Biology and Society, ed. by M. Maurizio, J. Cromby, D. Fitzgerald et al. 1st ed. London: Palgrave Macmillan, 2018.

11. Borkman T. Understanding Self-help / Mutual Aid: Experiential Learning in the Commons. New Brunswick, NJ: Rutgers University Press, 1999.

12. 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(4). P. 347–374.

13. Dimond R., Bartlett A., Lewis J. What Binds Biosociality? The Collective Effervescence of the Parent-led Conference. Social Science & Medicine. 2015. Vol. 126. P. 1–8.

14. McCormick M.S. Rational Hope. Philosophical Explorations. 2017. Vol. 20(1). P. 127–141.

15. Patients Like Me. URL: https://www.patientslikeme.com/symptoms/anticipatory-anxiety (date of access: 01.08.2022).

16. 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(2). P. 97–116.

17. Singer M., Bulled N., Ostrach B., Mendenhall E. Syndemics and the Biosocial Conception of Health. Lancet. 2017. Vol. 389(10072). P. 941–950.

18. Singer M., Clair S. Syndemics and Public Health: Reconceptualizing Disease in Bio‐social Context. Medical Anthropology Quarterly. 2009. Vol. 17(4). P. 423–441.