Community-based scientific culture for a pandemic. Long COVID
DOI:
https://doi.org/10.3989/arbor.2022.806003Keywords:
Community-based scientific culture, citizen science, public understanding of science, Long COVID, post-normal scienceAbstract
Despite some scattered precedents and exceptions, there is an evident gap in the literature on the concept of community-based scientific culture. By this we refer to situations in which citizens perceive a problem, come together, organise, communicate, and pool their resources to search for, evaluate and produce scientific knowledge to address the problem. In this paper, we propose a characterisation of community-based scientific culture. Subsequently, we apply and contrast it to the case of groups of people affected by long COVID. The methodology used was based on documentary analysis.
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Alwan, Nisreen A. (2020). A negative COVID-19 test does not mean recovery. Nature, 584, 170. https://doi.org/10.1038/d41586-020-02335-z PMid:32782377
Assaf, Gina et al. (2020). What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. medRxiv. https://patientresearchcovid19.com/research/report-1/
Brown, Phil (1992). Popular Epidemiology and Toxic Waste Contamination: Lay and Professional Ways of Knowing. Journal of Health and Social Behavior, 33(3): 267-281. https://doi.org/10.2307/2137356 PMid:1401851
Brown, Phil (1997). Popular Epidemiology Revisited. Current Sociology, 45(3): 137-156. https://doi.org/10.1177/001139297045003008
Callard, Felicity y Perego, Elisa (2021). How and why patients made Long Covid. Social Science & Medicine 268, 113426. https://doi.org/10.1016/j.socscimed.2020.113426 PMid:33199035 PMCid:PMC7539940
Callon, Michel y Rabeharisoa, Vololona (2008). The growing engagement of emergent concerned groups in political and economic life. Lessons from the French Association of neuromuscular disease patients. Science, Technology & Human Values, 33(2): 230-261. https://doi.org/10.1177/0162243907311264
Collins, Francis (2020). Citizen Scientists Take on the Callenge of Long-Haul COVID-19. NIH Director's Blog, 3 septiembre 2020. https://directorsblog.nih.gov/2020/09/03/citizen-scientists-take-on-the-challenge-of-long-haul-covid-19/
Corburn, Jason (2005). Street Science: Community Knowledge and Environmental Health Justice. Cambridge, MA: MIT Press. https://doi.org/10.7551/mitpress/6494.001.0001
Council of Canadian Academies (2014). Science Culture. Where Canada Stands. Ottawa, https://cca-reports.ca/reports/science-culture-where-canada-stands/
Davis, Hannah E. et al. (2021). Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact. EClinicalMedicine, 38. https://doi.org/10.1016/j.eclinm.2021.101019 PMid:34308300 PMCid:PMC8280690
De Cózar Escalante, José Manuel y Gómez Ferri, Javier (2021). Community-based scientific culture: wave or particle? En: Ana Muñoz van den Eynde y Carmelo Polino (Coords.), Pocket Science. The Praxeological Dimension of Scientific Culture (pp. 43-58). Madrid: CIEMAT.
De Kerckhove, Derrick (1995). La piel de la cultura: investigando la nueva realidad electrónica. Barcelona: Gedisa
Durkheim, Emile (1898). Représentations individuelles et représentations collectives. Revue de Métaphysique et de Morales, VI, 273-300.
Epstein, Steven (1995). The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology, & Human Values, 20(4), 408-437. https://doi.org/10.1177/016224399502000402 PMid:11653331
Epstein, Steven (1996). Impure science: AIDS, activism, and the politics of knowledge. Oakland, CA: University of California Press.
Funtowicz, Silvio y Cecilia Hidalgo (2021). Pandemia posnormal: las múltiples voces del conocimiento. Papeles de relaciones ecosociales y cambio global, 154, 109-122.
Funtowicz, Silvio y Ravetz, Jerome (1993). Science for the post-normal age. Futures, 25(7), 739-755. https://doi.org/10.1016/0016-3287(93)90022-L
Funtowicz, Silvio y Ravetz, Jerome (2003). Post-normal science. En: International Society for Ecological Economics (ed.), Online Encyclopedia of Ecological Economics. https://isecoeco.org/pdf/pstnormsc.pdf
Godin, Benoit y Gingras, Yves (2000). What Is Scientific and Technological Culture and How Is It Measured. A Multidimensional Model. Public Understanding of Science, 9(1), 43-58. https://doi.org/10.1088/0963-6625/9/1/303
Gómez Ferri, Javier (2012). Cultura: sus significados y diferentes modelos de cultura científica, Revista Iberoamericana de Educación, 58, 15-33 (1022-6508) - OEI/CAEU, http://www.rieoei.org/rie58a01.pdf https://doi.org/10.35362/rie580471
Gorna, Robin et al. (2021). Long COVID guidelines need to reflect lived experience. The Lancet, 397, 455-457. https://doi.org/10.1016/S0140-6736(20)32705-7 PMid:33357467
Guerrero Caballero, Silvia., y Bilbao Fernández, Sonia (2021). Persistencia del virus SARS-CoV-2 como causa etiológica de la sintomatología de larga duración en pacientes con COVID-19 persistente.Medicina General y de Familia, 10(2), 85-90. https://doi.org/10.24038/mgyf.2021.027
Haas, Peter M. (1989). Do Regimes Matter? Epistemic Communities and Mediterranean Pollution. International Organization, 43(3), 377-403. https://doi.org/10.1017/S0020818300032975
Hutchins, Edwin (1995). Cognition in the Wild. Boston: The MIT press. https://doi.org/10.7551/mitpress/1881.001.0001
Laspra, Belén (2018). La alfabetización científica. Madrid: OEI-Catarata.
Laspra, Belén y Emilio Muñoz (coords.) (2014). Culturas científicas e innovadoras, progreso social, Buenos Aires: Eudeba.
Lave, Jane y Wanger, Etienne (1991). Situated Learning. Legitimate peripheral participation. New York: Cambridge University Press. https://doi.org/10.1017/CBO9780511815355
Lee, Stuart y Roth, Wolff-Michael (2003). Science and the "Good Citizen": Community Based Scientific Literacy. Science, Technology, & Human Values, 28(3), 403-424. https://doi.org/10.1177/0162243903028003003
Lévy, Pierre (1994). L'Intelligence collective. París: La Découverte.
Lokugamage, Amali U., Taylor, Sharon y Rayner, Clare (2020). Patients' experiences of "longcovid" are missing from the NHS narrative. The bmj, 10 julio. https://blogs.bmj.com/bmj/2020/07/10/patients-experiences-of-longcovid-are-missing-from-the-nhs-narrative/
López Cerezo, José Antonio (2005). Participación ciudadana y cultura científica, Arbor CLXXXI, (715), 351-362. https://doi.org/10.3989/arbor.2005.i715.417
López Cerezo, José Antonio (2017). Comprender y comunicar la ciencia. Madrid: OEI-Catarata.
López-León, Sandra, Wegman-Ostrosky, Talia, Perelman, Carol, Sepulveda, Rosalinda, Rebolledo, Paulina A., Cuapio, Angelica, y Villapol, Sonia (2021). More than 50 Long-term effects of COVID-19: a systematic review and meta-analysis. SSRN 3769978. https://doi.org/10.2139/ssrn.3769978
Lowenstein, Fiona (2020). We Need to Talk About What Coronavirus Recoveries Look, Like, The New York Times, 13 abril 2020. https://www.nytimes.com/2020/04/13/opinion/coronavirus-recovery.html
McCorkell, Lisa et al. (2021). Patient-Led Research Collaborative: embedding patients in the Long COVID narrative. PAIN Reports, 6(1): pe913. https://doi.org/10.1097/PR9.0000000000000913 PMid:33987484 PMCid:PMC8112577
Meagher, Timothy (2021). Long COVID - An Early Perspective. Journal of Insurance Medicine, 49(1):19-23. https://doi.org/10.17849/insm-49-1-1-5.1 PMid:33784738
Moscovici, Serge (1961). El psicoanálisis, su imagen y su público. Buenos Aires: Editorial Huemul.
National Academies of Sciences, Engineering, and Medicine (2016). Science Literacy: Concepts, Contexts, and Consequences. Washington, DC: The National Academies Press.
Nonaka, Ikujiro. y Takeuchi, Hirotaka (1995). The Knowledge-Creating Company: How Japanese Companies Create the Dynamics of Innovation. Oxford: Oxford University Press. https://doi.org/10.1016/0024-6301(96)81509-3
Núñez Castro, Andrés y Gómez Ferri, Javier (2022). ¿Qué es esa cosa llamada cultura científica comunitaria? Una aproximación y un modelo de análisis. Techno Review. International Technology, Science and Society Review 11(2). https://doi.org/10.37467/revtechno.v11.4437
Perego, Elisa, y Callard, Felicity (2021, February 9). Patient-made Long Covid changed COVID-19 (and the production of science, too), SocArXiv https://doi.org/10.31235/osf.io/n8yp6
Rabeharisoa, Vololona, Moreira, Tiago, y Akrich, Madeleine (2014). Evidence-based activism: Patients', users' and activists' groups in knowledge society. BioSocieties, 9(2), 111-128. https://doi.org/10.1057/biosoc.2014.2
Roth, Wolff-Michael (2003). Scientific literacy as an emergent feature of collective human praxis. Journal of Curriculum Studies, 35(1), 9-23. https://doi.org/10.1080/00220270210134600
Roth, Wolff-Michael y Lee, Stuart (2002). Scientific literacy as collective praxis. Public Understanding of Science, 11(1), 33-56 https://doi.org/10.1088/0963-6625/11/1/302
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Ministerio de Economía y Competitividad
Grant numbers FFI2017-82217-C2-1-P