A ética na investigação científica: Particularidades nos estudos em pessoas com doença de Parkinson

Ricardo Loureiro; Joana Bernardo; Hugo Loureiro; Albertina  Oliveira; Margarida  Lima

doi:10.14422/rib.i21.y2023.008

Authors

Ricardo Loureiro Escola Superior de Enfermagem de Coimbra https://orcid.org/0000-0001-6135-2278
Joana Bernardo Escola Superior de Enfermagem de Coimbra https://orcid.org/0000-0003-3614-9061
Hugo Loureiro https://orcid.org/0000-0003-3287-8718
Albertina Oliveira Universidade de Coimbra https://orcid.org/0000-0001-9521-528X
Margarida Lima Universidade de Coimbra https://orcid.org/0000-0002-6239-1137

DOI:

https://doi.org/10.14422/rib.i21.y2023.008

Keywords:

Parkinson’s disease, Freire’s ethics, scientific research

Abstract

Given the interest in academic and scientific circles, ethics in research has been studied for several decades. When carrying out a narrative review to find the ethical assumptions in research on Parkinson's disease, the possibility of integrating Freire's perspective in the act of investigating was also considered. A new stream of research based on Freire's critical pedagogy is to simultaneously reflect on the ontological, ideological, political and cultural identity domains, described throughout his work, and based on ethical-critical awareness.

The ethical requirements of clinical research in Parkinson's disease are: (1) respect for participants; (2) risk/benefit assessment; (3) informed consent; (4) adding value; (5) scientific validity; (6) careful selection of participants; (7) independent access to the study. Scientific evidence is consensual, verifying the inclusion of these people in a broader group of participants in view of their vulnerable condition.

Downloads

Download data is not yet available.

References

Appelbaum, P. S., Roth, L. H., & Lidz, C. (1982). The therapeutic misconception: informed consent in psychiatric research. International journal of law and psychiatry, 5(3-4), 319-329. https://doi.org/10.1016/0160-2527(82)90026-7

All European Academies. (2018). Código Europeu de Conduta para a Integridade da Investigação. ALLEA. https://www.allea.org/wp-content/uploads/2018/11/ALLEA-European-Code-of-Conduct-for-Research-Integrity-2017-Digital_PT.pdf

Anjos, V. (2013). Modelo genético da Doença de Parkinson baseado na sobreexpressão estriatal de alfa-sinucleína (Tese de Mestrado). Faculdade de Medicina da Universidade de Coimbra. http://hdl.handle.net/10316/25031

Barbosa, D., & Souza, M. P. R. (2008). Ética na pesquisa qualitativa: reflexões sobre privacidade, anonimato e confidencialidade. In Guerriero, Schmidt & Zicker (eds.), Ética nas Pesquisas em Ciências Humanas e Sociais na Saúde (pp. 237-249). Aderaldo & Rothschild Editores.

Beauchamp, T., & Childress J. (1979). Principles of biomedical ethics. Oxford University Press.

Borges, V. (2014). O princípio ético-crítico freireano. Revista Diálogo Educacional, 14(41), 213-231. http://dx.doi.org/10.7213/dialogo.educ.14.041.AO01

Brotchi, J. (1991). Ethique et recherche en neurochirurgie [Ethics and research in neurosurgery]. Revue medicale de Bruxelles, 12(6), 203-207.

Clausen, J. (2010). Ethical brain stimulation - neuroethics of deep brain stimulation in research and clinical practice. The European journal of neuroscience, 32(7), 1152-1162. https://doi.org/10.1111/j.1460-9568.2010.07421.x

Cohen, P., Herman, L., Jedlinski, S., Willocks, P., & Wittekind, P. (2007). Ethical Issues in Clinical Neuroscience Research: A Patient’s Perspective. Neurotherapeutics, 4(3), 537-544. https://doi.org/10.1016/j.nurt.2007.04.008

Conselho Nacional de Ética para as Ciências da Vida. (2014). Parecer sobre as vulnerabilidades das pessoas idosas, em especial das que residem em instituições. Conselho Nacional de Ética para as Ciências da Vida.

Creswell, J. (2009). Research Design - Qualitative, Quantitative, and Mixed Methods Approaches. SAGE.

Cruz, M. (2008). Freire, Paulo. Pedagogia da autonomia: saberes necessários à prática educativa. Revista Faced, (13), 167-172.

Delgadillo, A. (2020). Paulo freire, las pedagogías post-críticas y el dilema pedagógico. Revista Interuniversitaria, 32(2), 51-63. https://doi.org/10.14201/teri.22718

Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? JAMA, 283(20), 2701- 2711. https://doi.org/10.1001/jama.283.20.2701

Espinoza, O. (2017). Paulo Freire’s ideas as an alternative to higher education neo-liberal reforms in Latin America. Journal of Moral Education, 46(4), 435-448. http://dx.doi.org/10.1080/03057240.2017.1363601

Estrada-Bellmann, I., & Meléndez-Flores, J. D. (2020). Ethical implications of shared decision-making in Parkinson’s disease treatment. Revista Mexicana de Neurociencia, 21(6), 235-239. https://doi.org/10.24875/RMN.20000022

European Comission. (2013). Ethics for researchers: Facilitating Research Excelence in FP7. European Union.

European Union. (2020). Bonn Declaration on Freedom of Scientific Research. European Union.

Ferrada, C., & Barcia, L. R. (2015). Obligación ética y jurídica de prevenir y reducir al máximo la aparición de nuevas discapacidades en las personas mayores en Chile. Acta bioethica, 21(2), 207-215. https://dx.doi.org/10.4067/S1726-569X2015000200007

Fortin, M. (1999). O Processo de Investigação: da concepção à realização. Lusociência.

Freire, P. (2006). Pedagogia da autonomia: saberes necessários à prática educativa. Paz e terra.

Guilherme, M. (2017). Freire’s philosophical contribution for a theory of intercultural ethics: A deductive analysis of his work. Journal of Moral Education, 46(4), 422-434. http://dx.doi.org/10.1080/03057240.2017.1363600

Glass, R. (2013). Revisitando os fundamentos da educação para a libertação: o legado de Paulo Freire / Revisiting the foundations of liberation education: Paulo Freire’s legacy. Educação & Realidade, 38(3), 831-851. https://doi.org/10.1590/S2175-62362013000300008

Gustafsson, J. (2017). Single case studies vs. multiple case studies: A comparative study. Halmstad University.

Hagell, P., Reimer, J., & Nyberg, P. (2009). Whose quality of life? Ethical implications in patient-reported health outcome measurement. Value in health: the journal of the International Society for Pharmacoeconomics and Outcomes Research, 12(4), 613-617. https://doi.org/10.1111/j.1524-4733.2008.00488.x

Hamido, G., & Uva, M. (2012). Ética em Educação: Sentidos, razões e consequências. Revista Interacções, 8(21), 1-12. https://doi.org/10.25755/int.1518

Henderson, G. E., Churchill, L. R., Davis, A. M., Easter, M. M., Grady, C., Joffe, S., Kass, N., King, N. M., Lidz, C. W., Miller, F. G., Nelson, D. K., Peppercorn, J., Rothschild, B. B., Sankar, P., Wilfond, B. S., & Zimmer, C. R. (2007). Clinical trials and medical care: defining the therapeutic misconception. PLoS medicine, 4(11), e324. https://doi.org/10.1371/journal.pmed.0040324

Hurst, S. A., Mauron, A., Momjian, S., & Burkhard, P. R. (2015). Ethical Criteria for Human Trials of Stem-Cell- Derived Dopaminergic Neurons in Parkinson’s Disease. AJOB Neuroscience, 6(1), 52-60. https://doi.org/10.1080/21507740.2014.990544

Joldersma, C. W. (2001). The tension between justice and freedom in Paulo Freire’s epistemology. The Journal of Educational Thought, 35(2), 129. https://www.proquest.com/scholarly-journals/tension-between-justice-freedom-paulo-freires/docview/213796003/se-2?accountid=43959

Kim, S. Y., De Vries, R., Holloway, R. G., Wilson, R., Parnami, S., Kim, H. M., Frank, S., & Kieburtz, K. (2012). Sham surgery controls in Parkinson’s disease clinical trials: views of participants. Movement disorders: official journal of the Movement Disorder Society, 27(11), 1461–1465. https://doi.org/10.1002/mds.25155

Kubu, C. S., & Ford, P. J. (2017). Clinical Ethics in the Context of Deep Brain Stimulation for Movement Disorders. Archives of clinical neuropsychology: the official journal of the National Academy of Neuropsychologists, 32(7), 829-839. https://doi.org/10.1093/arclin/acx088.

Lindert, J., & Potter, C. (2015). Developing public health ethics learning modules - can we learn from critical pedagogy? Public Health Reviews, 36. http://dx.doi.org/10.1186/s40985-015-0006-z

Lopes, M., Meningaud, J. P., Behin, A., & Hervé, C. (2003). Consent: a Cartesian ideal? Human neural transplantation in Parkinson’s disease. Medicine and law, 22(1), 63-71.

Loureiro, R., Martins, R., Bernardo, J. & Batista. S. (2021). Efficacy of Rehabilitation on Mobility, Prevention and Reduction of the Fall’s Risk in Parkinson’s Patients. New Trends in Qualitative Research, 8, 163-171. https://doi.org/10.36367/ntqr.8.2021.163-171

Low, J. A., & Ho, E. (2017). Managing Ethical Dilemmas in End-Stage Neurodegenerative Diseases. Geriatrics (Basel, Switzerland), 2(1), 8. https://doi.org/10.3390/geriatrics2010008

Mayhew, M. J., & Fernández, S. D. (2007). Pedagogical practices that contribute to social justice outcomes. Review of Higher Education, 31(1), 55-80. https://doi.org/10.1353/rhe.2007.0055

Neto, J. (2012). O compromisso ético do educador social. Revista Lusófona de Educação, (22),55-67.

Nunes, L. (2015). Olhares Bioéticos para o Envelhecimento dos documentos produzidos pelos Conselhos de Ética. Revista Ibero Americana de Saúde e Envelhecimento, 1(2), 234-260. https://doi.org/10.24902/r.riase.2015.1(2).234

Organização das Nações Unidas. (1991). Princípios das Nações Unidas para as pessoas idosas. Assembleia Geral das Nações Unidas.

Organização das Nações Unidas para o Ensino, a Ciência e a Cultura. (2006). Declaração Universal sobre Bioética e Direitos Humanos. Organização das Nações Unidas.

Paranhos, D., Albuquerque, A., & Garrafa, V. (2017). Vulnerabilidade do paciente idoso à luz do princípio do cuidado centrado no paciente. Saúde e Sociedade, 26(4), 932-942. https://dx.doi.org/10.1590/s0104-12902017170187

Pegado, E., Zózimo, J., & Lopes, N. (2016). Histórias de (uma) vida: desafios e dilemas éticos na investigação com idosos. Revista da Associação Portuguesa de Sociologia (12), 5-21. https://doi.org/10.30553/SOCIOLOGIAONLINE.2016.12.1

Peroza, J. (2019). O princípio responsabilidade e a Educação: Aportes Freirianos para uma compreensão ecopedagógica da heurística do temor em Hans Jonas. Eccos, (50), 1-23. http://dx.doi.org/10.5585/EccoS.N50.8485

Polli, J. (2018). Ética e Educação: um diálogo entre o pensamento de Paulo Freire e de Jürgen Habermas. Filosofia E Educação, 10(1), 5-20. https://doi.org/10.20396/rfe.v10i1.8651987

Rubens, L. J., & Soto-Arango, D. (2020). Paulo freire and critical pedagogy: His legacy for a new pedagogy of the south. Revista Ibero-Americana de Estudos Em Educação, 15(3), 1072-1093. http://dx.doi.org/10.21723/riaee.v15i3.12472

Sánchez, L. Q. (2013). Potter y Freire: diálogo de fundamentos teóricos para la educación bioética / Potter and Freire: dialogue of theorical fundamental for bioethics education / Potter e Freire: diálogo dos fundamentos teóricos para a educação bioética. Revista Bioética, 21(1), 158-167. https://doi.org/10.1590/S1983-80422013000100019

Sandoval, C. (2000). Methodology of the Oppressed. University of Minnesota Press.

Santos, J. D. S., & Gehlen, S. T. (2020). Os valores na pesquisa em Educação em Ciências e Indicativos para uma prática educacional ético-crítica. Investigacões Em Ensino De Ciências, 25(1), 329-357. http://dx.doi.org/10.22600/1518-8795.ienci2020v25n1p41

Severino, A. J. (2014). Dimensão ética da investigação científica. Práxis Educativa (Brasil), 9(1), 199-208. https://doi.org/10.5212/PraxEduc.v.9i1.0009

Sociedade Portuguesa de Ciências da Educação. (2014). Instrumento de Regulação Ético-Deontológica - Carta Ética. Sociedade Portuguesa de Ciências da Educação.

Sokol, L. L., Young, M. J., Paparian, J., Kluger, B. M., Lum, H. D., Besbris, J., Kramer, N. M., Lang, A. E., Espay, A. J., Dubaz, O. M., Miyasaki, J. M., Matlock, D. D., Simuni, T., & Cerf, M. (2019). Advance care planning in Parkinson’s disease: ethical challenges and future directions. NPJ Parkinson’s disease, 5, 24. https://doi.org/10.1038/s41531-019-0098-0

Stone, E. G. (2018). Evidence-Based Medicine and Bioethics: Implications for Health Care Organizations, Clinicians, and Patients. The Permanente Journal, 22, 18-030. https://doi.org/10.7812/TPP/18-030

Swift, T., & Huxtable, R. (2013). The ethics of sham surgery in Parkinson’s disease: back to the future? Bioethics, 27(4), 175–185. https://doi.org/10.1111/j.1467-8519.2011.01931.x

Towns, C. R. (2017). The science and ethics of cell-based therapies for Parkinson’s disease. Parkinsonism & related disorders, 34, 1–6. https://doi.org/10.1016/j.parkreldis.2016.10.012

Yazan, B. (2015). Three Approaches to Case Study Methods in Education. The Qualitative Report, 20(2), 134-152. https://nsuworks.nova.edu/tqr/vol20/iss2/12