PARTICIPATION AS AN ETHICAL PRINCIPLE IN RESEARCH FOR CARE WITH INDIGENOUS PEOPLES

NARRATIVE REVIEW

Authors

DOI:

https://doi.org/10.22370/bre.81.2023.3698.

Keywords:

Indigenous Peoples, Research Ethics, Community

Abstract

Introduction: Developing participatory strategies as an ethical principle can contribute to culturally appropriate research based on horizontal practices. Objective: To describe participation strategies as an ethical aspect in research experiences for care with indigenous peoples. Methodology: Narrative review. SCIELO, PUBMED, Web of Science, CINAHL, and SCOPUS databases were used. The search strategies used were indigenous peoples (OR) Native Peoples (AND) Ethic research (AND) Community (OR) communities. We screened by title and abstracts according to established inclusion criteria. Principles of content analysis were used for evidence synthesis. Results: 17 manuscripts were obtained, where 100% corresponded to qualitative articles. Three main categories are described: Structures for participation, methods for participation, and trust relationships for participation. Conclusion: The establishment of a trust for participation means a profound change in the relationship between researchers and native peoples, which requires research practices oriented towards meaningful community participation, framed in ethical guidelines that outline the governance of research, with emphasis on transparency, agreements, and reciprocity mechanisms.

Downloads

Download data is not yet available.

Author Biography

Beatríz Carrasco Díaz, Universidad Arturo Prat

Enfermera. Dra © en Ciencia de Enfermería Universidad Andrés Bello. Académica Facultad de Ciencias de
la Salud, Universidad Arturo Prat, Chile

References

Ministerio de Planificación y Cooperación. Ley 19253 Normas Sobre Protección, Fomento y Desarrollo de los Indígenas, y crea La Corporación Nacional De Desarrollo Indígena. 19253 Chile; 2008.

Ministerio de Salud. Diagnóstico de Salud de los Pueblos Indígenas de Chile. Vol. 253. 2020.

Abbasi M, Majdzadeh R, Zali A, Karimi A, Akrami F. The evolution of public health ethics frameworks: systematic review of moral values and norms in public health policy. Vol. 21, Medicine, Health Care and Philosophy. Springer Netherlands; 2018. p. 387–402.

Urrego-Mendoza ZC, Coral-Palchucán GA, Aristizabal-Tobler CC, Bello-Urrego A, Bastidas-Jacanamijoy LO. Ethical considerations for health research regarding Colombian indigenous peoples. Revista de Salud Pública. 2017 Nov 1;19(6):827–32.

Meza Salcedo G. Ética de la investigación desde el pensamiento indígena: derechos colectivos y el principio de la comunalidad TT - Ethics of research from indigenous thinking: collective rights and the principle of comunalidad TT - Ètica de la investigació des del pens. Rev Bioet Derecho. 2017;(41):141–59.

Brannelly T, Boulton A. The ethics of care and transformational research practices in Aotearoa New Zealand. Qualitative Research. 2017 Jun 1;17(3):340–50. doi: 10.1177/1468794117698916.

Parker M, Pearson C, Donald C, Fisher CB. Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities. Am J Community Psychol. 2019 Sep 1;64(1–2):9–20. doi: 10.1002/ajcp.12360

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ [Internet]. 2021 Mar 29 [cited 2022 Jun 8];372. https://www.bmj.com/content/372/bmj.n71

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008 Apr;62(1):107–15. doi: 10.1111/j.1365-2648.2007.04569.x.

Bond C, Foley W, Askew D. “it puts a humanface on the researched” - A qualitative evaluation of an Indigenous health research governance model. Aust N Z J Public Health. 2016 Apr 1;40:S89–95. doi: 10.1111/1753-6405.12422

Fraser S, Vrakas G, Laliberte A, Mickpegak R. Everyday ethics of participation: a case study of a CBPR in Nunavik. Glob Health Promot. 2018 Mar;25(1):82–90. doi: 10.1177/1757975917690496.

Ferrazzi P, Christie P, Jalovcic D, Tagalik S, Grogan A. Reciprocal Inuit and Western research training: facilitating research capacity and community agency in Arctic research partnerships. Int J Circumpolar Health. 2018 Jan 1;77(1). doi: 10.1080/22423982.2018.1425581

Bull J, Hudson A. Research governance in NunatuKavut: engagement, expectations and evolution. Int J Circumpolar Health. 2019 Jan 1;78(2, SI). doi: 10.1108/QROM-04-2019-1748.

Benveniste T, King L. Researching together: Reflections on ethical research in remote Aboriginal communities. Learning Communities-International Journal Of Learning In Social Contexts. 2018 Nov;(23, SI):52–63.

Goodman A, Morgan R, Kuehlke R, Kastor S, Fleming K, Boyd J, et al. We’ve Been Researched to Death: Exploring the Research Experiences of Urban Indigenous Peoples in Vancouver, Canada. Int Indig Policy J. 2018;9(2). doi: 10.18584/iipj.2018.9.2.3.

Sullivan CT. Who holds the key? Negotiating gatekeepers, community politics, and the “right” to research in Indigenous spaces. Geographical Research. 2020 Nov 1;58(4):344–54. doi: 10.1111/1745-5871.12415.

Peltier D, Martin C, Masching R, Standup M, Cardinal C, Nicholson V, et al. A Journey of Doing Research “In a Good Way”: Partnership, Ceremony, and Reflections Contributing to the Care and Wellbeing of Indigenous Women Living with HIV in Canada. Int Indig Policy J. 2020 Oct 1;11(4):1–22. doi: 10.18584/IIPJ.2020.11.4.8215.

Funnell S, Tanuseputro P, Letendre A, Bearskin LB, Walker J. Nothing about us, without us. How community-based participatory research methods were adapted in an indigenous end-oflife study using previously collected data. Canadian Journal on Aging. 2020 Jun 1;39(2):145–55. doi: 10.1017/S0714980819000291.

Chung-Do JJ, Ho-Lastimosa I, Keaulana S, Ho K, Hwang PW, Radovich T, et al. Waimānalo Pono Research Hui: A Community–Academic Partnership to Promote Native Hawaiian Wellness through Culturally Grounded and Community-Driven Research and Programming. Am J Community Psychol. 2019 Sep 1;64(1–2):107–17. doi: 10.1002/ajcp.12355

Fitzpatrick EF, Macdonald G, Martiniuk AL, Oscar J, D’Antoine H, Carter M, et al. The picture talk project: Aboriginal community input on consent for research. BMC Med Ethics. 2019 Jan 29;20(1):1–15. doi: 10.1186/s12910-016-0139-8

Rojas LI, Osorio EE, Kejtsitani F. What’s yours is mine and what’s mine is mine? Re-thinking intellectual property and research ethics from the experience of the purhépecha community of Cherán. Onati Socio-Legal Series. 2020;10(1):6–34. doi: 10.35295/osls.iisl/0000-0000-0000-1102.

Furness J, Nikora LW, Hodgetts D, Robertson N. Beyond Ethics to Morality: Choices and Relationships in Bicultural Research Settings. J Community Appl Soc Psychol. 2016 Jan 1;26(1):75–88. doi: 10.1002/casp.2239.

Nygård RH, Saus M. Emphasizing indigenous communities in social work research ethics. Int Soc Work. 2016 Sep 1;59(5):666–78. doi: 10.1177/0020872816646815

Hall L, Anderson L, Gibson F, Kantawara M, Martin B, Oldfield Y. You helped us and now we’re going to all help you: What we learned about how to do research together. Learning Communities-International Journal Of Learning In Social Contexts. 2018 Nov;(23, SI):16–31.

Riddell JK, Salamanca A, Pepler DJ, Cardinal S, McIvor O. Laying the groundwork: A practical guide for ethical research with indigenous communities. Int Indig Policy J. 2017;8(2). doi: 10.18584/iipj.2017.8.2.6.

Bull J, Beazley K, Shea J, MacQuarrie C, Hudson A, Shaw K, et al. Shifting practise: recognizing Indigenous rights holders in research ethics review. Qualitative research in organizations and management. 2020 Mar 29;15(1, SI):21–35. doi: 10.1108/QROM-04-2019-1748. 27. Fitzpatrick EFMM, Martiniuk ALCC, D’Antoine H, Oscar J, Carter M, Elliott EJ. Seeking consent for research with indigenous communities: a systematic review. BMC Med Ethics. 2016 Oct 22;17(1):65. doi: 10.1186/s12910-016-0139-8.

Ferdinand A, Oyarce AM, Kelaher M, Anderson I. Reflections on ethics in Indigenous health research in Chile. Rev Latinoam Bioet. 2018;18(2):162–84. doi: 10.18359/rlbi.3451

Nascimento WF do, Garrafa V. Por uma vida não colonizada: diálogo entre bioética de intervenção e colonialidade. Saúde e Sociedade. 2011 Jun;20(2):287–99. doi: 10.1590/S0104-12902011000200003.

Rocha-Buelvas A, Ruíz-Lurduy R. Agendas for indigenous research and decoloniality. Vol. 41, Izquierdas. Universidad de Santiago de Chile; 2018. p. 184–97.

Fajreldin Chuaqui VE. Situación de los pueblos indígenas en Chile frente a la investigación biomédica. Una mirada interdisciplinar. Anthropologica. 2023 Feb 27;40(49):307–32. doi: 10.18800/anthropologica.202202.017.

Fajreldin V. Problemas bioéticos de la investigación biomédica con pueblos indígenas de Chile. Acta Bioeth. 2010 Nov 30;16(2). doi: 10.4067/S1726-569X2010000200012

Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F, et al. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study. BMJ Open. 2014 Jun 17;4(6):e004943–e004943. doi: 10.1136/bmjopen-2014-004943

Pons-Vigués M, Pujol-Ribera E, Berenguera A, Violán C, Mahtani-Chugani V. La participación ciudadana en la investigación desde la perspectiva de investigadores de atención primaria. Gac Sanit. 2019 Nov;33(6):536–46. doi: 10.1016/j.gaceta. 2018.05.011

Published

2023-05-29

Issue

Section

Review Articles