Reflexiones sobre la ética de la investigación en salud indígena en Chile

  • Angeline Ferdinand University of Melbourne
  • Ana María Oyarce Universidad de Chile
  • Margaret Kelaher Universidad de Melbourne
  • Ian Anderson Universidad de Melbourne
Palabras clave: Bioética, indígenas, investigación, mapuche

Resumen

El objetivo de este artículo es reflexionar sobre la creación de una infraestructura de investigación ética más sólida en relación con la investigación de la salud de la población indígena en Chile. Se expone un marco de investigación ética que apunta a apoyar una relación más equitativa y colaborativa entre académicos y comunidades indígenas, lo que puede conducir a investigaciones más pertinentes y a mayores beneficios para las comunidades de conformidad con los principios de la investigación bioética. Se emplearon experiencias internacionales para informar sobre la forma en que se podría establecer una infraestructura de investigación de la salud de la población indígena en el contexto chileno. Luego, se presenta el desarrollo y la adopción de directrices para la investigación ética de la salud de la población indígena y la orientación hacia la investigación colaborativa y dirigida por la comunidad como mecanismos que pueden ayudar a lograr estos objetivos.

Biografía del autor/a

Ana María Oyarce, Universidad de Chile

Profesora

Doctora en Antropología

Margaret Kelaher, Universidad de Melbourne
Doctora en Salud Pública
Ian Anderson, Universidad de Melbourne
Doctor en Salud Pública

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Disciplinas:

Bioética, salud indígena, política pública

Lenguajes:

es

Agencias de apoyo:

Universidad de Melbourne, Universidad de Chile, National Health and Medical Council, Ministerio de Educación de Australia

Biografía del autor/a

Ana María Oyarce, Universidad de Chile

Profesora

Doctora en Antropología

Margaret Kelaher, Universidad de Melbourne
Doctora en Salud Pública
Ian Anderson, Universidad de Melbourne
Doctor en Salud Pública

Referencias bibliográficas

Australian Institute of Aboriginal and Torres Strait Islander Studies, & The Lowitja Institute. (2013). Researching the right way: Aboriginal and Torres Strait Islander health research ethics: A domestic and international review. Retrieved from Canberra, Australia: MISSING INFO.

Australian Institute of Aboriginal and Torres Strait Islander Studies, & The Lowitja Institute. (2014). Evaluation of the National Health and Medical Research Council documents: Guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research 2004 (Values and Ethics) and Keeping research on track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics 2005 (Keeping research on track). Retrieved from Canberra, Australia: MISSING INFO.

Ball, J., & Janyst, P. (2008). Enacting research ethics in partnerships with indigenous communities in Canada: "Do it in a good way". Journal of Empirical Research on Human Research Ethics: JERHRE, 3 (2), 33-51. https://doi.org/10.1525/jer.2008.3.2.33

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York: Oxford University Press.

Bharadwaj, L. (2014). A framework for building research partnerships with First Nations communities. Environmental Health Insights, 8, 15-25. https://doi.org/10.4137/EHI.S10869

Brady, M. (1995). Culture in treatment, culture as treatment-A critical appraisal of development in addictions programs for Indigenous North Americans and Australia. Social Science & Medicine, 41(11), 1487-1498. https://doi.org/10.1016/0277-9536(95)00055-C

Brunger, F., & Wall, D. (2016). "What do they really mean by partnerships?" Questioning the unquestionable good in ethics guidelines promoting community engagement in Indigenous health research. Qualitative Health Research, 26(13), 1862-1877. https://doi.org/10.1177/1049732316649158

Carrese, J. A., & Rhodes, L. A. (1995). Western bioethics on the Navajo reservation. Benefit or harm? JAMA, 274(10), 826-829. https://doi.org/10.1001/jama.1995.03530100066036

Cervini, E. (2011, 13 September). A theory out of the darkness. The Sydney Morning Herald. Retrieved from: http://www.smh.com.au/national/education/a-theory-out-of-the-darkness-20110912-1k5r6.html

Chandler, M. J., & Lalonde, C. E. (2009). Cultural continuity as a moderator of suicide risk among Canada's First Nations. Vancouver: Univ British Columbia Press.

Comisión Nacional de Investigación Científica y Tecnológica. (2014). Participantes de investigación científica en situatción de vulnerabilidad: Desafíos y resguardos especiales. 9o Taller de Bioética organizado por Comité Asesor de Bioética FONDECYT de CONICYT. Retrieved from Santiago, Chile: MISSING INFO.

Commonwealth of Australia. (2013). National Aboriginal and Torres Strait Islander Health Plan 2013-2023. Retrieved from: http://www.health.gov.au/internet/main/publishing.nsf/content/B92E980680486C3BCA257BF0001BAF01/$File/health-plan.pdf

Comunidad de Historia Mapuche. (2013). Comunidad de Historia Mapuche ante el Fondo de Investigación Avanzada en Áreas Prioritarias (FONDAP). Retrieved from: http://www.mapuche.info/print.php?pagina=4051

Couzos, S., Lea, T., Murray, R., & Culbong, M. (2005). 'We are not just participants - We are in charge': The NACCHO ear trial and the process for Aboriginal community-controlled health research. Ethnicity & Health, 10(2), 91-111. https://doi.org/10.1080/13557850500071038

Danto, D., & Walsh, R. (2017). Mental health perceptions and practices of a Cree community in Northern Ontario: A qualitative study. International Journal of Mental Health and Addiction, 15(4), 725-737. https://doi.org/10.1007/s11469-017-9791-6

Dobbin, M. (2015, 30 November). Heart of darkness: Melbourne University's racist professors. The Age. Retrieved from: http://www.theage.com.au/victoria/heart-of-darkness-melbourne-universitys-racist-professors-20151127-gl9whm.html

Dudgeon, P., Kelly, K., & Walker, R. (2010). Closing the gaps in and through Indigenous health research: Guidelines, processes and practices. Australian Aboriginal Studies, (2), 81-91.

Durie, M., Milroy, H., & Hunter, E. (2009). Mental health and the Indigenous peoples of Australia and New Zealand. In G. G. Valaskakis (Ed.), Healing Traditions: The Mental Health of Aboriginal Peoples in Canada (pp. 36-55). Vancouver: UBC Press.

First Nations Centre. (2003). Ethics Tool Kit: Information to share from the First Nations Centre of the National Aboriginal Health Organization. Retrieved from Ottawa, Canada: MISSING INFO.

First Nations Centre. (2005). Ownership, Control, Access, and Possession (OCAP) or self-determination applied to research: A critical analysis of contemporary First Nations research and some options for First Nations communities. Retrieved from: MISSING INFO.

First Nations Centre. (2007a). Considerations and templates for ethical research practices. Retrieved from Ottawa, Canada: MISSING INFO.

First Nations Centre. (2007b). OCAP: Ownership, control, access and possession. Retrieved from Ottawa, Canada: MISSING INFO.

Glass, K. C., & Kaufert, J. (2007). Research ethics review and Aboriginal community values: Can the two be reconciled?, 25. https://doi.org/10.1525/jer.2007.2.2.25

Grekul, J., Krahn, A., & Odynak, D. (2004). Sterilizing the "feeble-minded": Eugenics in Alberta, Canada, 1929-1972. Journal of Historical Sociology, 17(4), 358-384. https://doi.org/10.1111/j.1467-6443.2004.00237.x

Guillemin, M., & Gillam, L. (2004). Ethics, reflexivity, and "ethically important moments" in research. Qualitative Inquiry, 10(2), 261-280. https://doi.org/10.1177/1077800403262360

Harding, A., Harper, B., Stone, D., O'Neill, C., Berger, P., Harris, S., & Donatuto, J. (2012). Conducting research with tribal communities: Sovereignty, ethics, and data-sharing issues. Environmental Health Perspectives, 120(1), 6-10. https://doi.org/10.1289/ehp.1103904

Hedgecoe, A. M. (2004). Critical bioethics: Beyond the social science critique of applied ethics. Bioethics, 18(2), 120-143. https://doi.org/10.1111/j.1467-8519.2004.00385.x

Hudson, M., Milne, M., Reynolds, P., Russell, K., & Smith, B. (2010). Te Ara Tika: Guidelines for Māori research ethics: A framework for researchers and ethics committee members. Retrieved from Purnell, New Zealand: MISSING INFO.

Humphery, K. (2001). Dirty questions: Indigenous health and 'Western research'. Australian and New Zealand Journal of Public Health, 25(3), 197-202. https://doi.org/10.1111/j.1467-842X.2001.tb00563.x

Jamieson, L. M., Paradies, Y. C., Eades, S., Chong, A., Maple-Brown, L., Morris, P., . . . Brown, A. (2012). Ten principles relevant to health research among Indigenous Australian populations. Med. J. Aust., 197(1), 16-18. https://doi.org/10.5694/mja11.11642

Kerwin, D. W. (2011). When we become people with a history. International Journal of Inclusive Education, 15(2), 249-261. https://doi.org/10.1080/13603110902783373

King, M., Smith, A., & Gracey, M. (2009). Indigenous health part 2: the underlying causes of the health gap. The Lancet, 374(9683), 76-85. https://doi.org/10.1016/S0140-6736(09)60827-8

Kukkanen, R. (2006). From research as colonialism to reclaiming autonomy: Toward a research ethics framework in Sápmi. Retrieved from: MISSING INFO.

Kwaymullina, A. (2016). Research, ethics and Indigenous peoples: An Australian Indigenous perspective on three threshold considerations for respectful engagement. AlterNative, 12(4), 437-449. https://doi.org/10.20507/AlterNative.2016.12.4.8

León Correa, F. J. (2008). De los principios de la bioética clínica a una bioética social para Chile. Revista Medica De Chile, 136(8), 1078-1082. https://doi.org/10.4067/S0034-98872008000800018

León Correa, F. J. (2009). Bioética: Entre la universalidad y la interculturalidad. Los desafíos éticos de la globalización. Revista Medicina y Humanidades, 2.

Leyva Solano, X., Burguete, A., & Speed, S. (Eds.). (2008). Gobernar (en) la diversidad: Experiencias indígenas desde América Latina: Hacia la investigación de co-labor (1st ed.). México, D.F.: CIESAS; Quito: FLACSO Ecuador; Guatemala: FLACSO Guatemala.

Lolas Stepke, F. (Ed.) (2010). Bioética en América Latina: Una década de evolución: Centro Interdisciplinario de Estudios en Bioética - Universidad de Chile. MISSING INFO.

Menzies, C. R. (2004). Putting words into action: Negotiating collaborative research in Gitxaala. Canadian Journal of Native Education, 28(1/2), 15-32.

Ministerio de Salud. (2006). Sobre la investigación científica en el ser humano, su genoma, y prohibe la clonación humana. Santiago, Chile. MISSING INFO.

Ministerio de Salud. (2012). Ley No 20.584: Regla los derechos y deberes que tienen las personas en relación con acciones vinculadas a su atención en salud. Retrieved from: http://www.leychile.cl/Navegar?idNorma=1039348

Mohindra, K. (2016). Public health research and scheduled tribes: An ethical lens. Indian Journal of Public Health, 60(3), 221-223. https://doi.org/10.4103/0019-557X.189026

Mohindra, K. S. (2015). Research and the health of indigenous populations in low- and middle-income countries. Health Promotion International. https://doi.org/10.1093/heapro/dav106

Myser, C. (2003). Differences from somewhere: The normativity of whiteness in bioethics in the United States. American Journal of Bioethics, 3(2), 1-11. https://doi.org/10.1162/152651603766436072

Nahuelpán M, H. J. (2013). El lugar del "indio" en la investigación social: Reflexiones en torno a un debate político y epistémico aún pendiente. Rev. Austral. Sienc. Soc., 24, 71-91. https://doi.org/10.4206/rev.austral.cienc.soc.2013.n24-04

National Health and Medical Research Council. (2003). Values and ethics: Guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Retrieved from Canberra, Australia: MISSING INFO.

Nicholls, R. (2009). Research and Indigenous participation: Critical reflexive methods. International Journal of Social Research Methodology, 12(2), 117-126. https://doi.org/10.1080/13645570902727698

Oyarzún, G. M., Pinto, C. M. E., Raineri, B. G. G., Amigo, H., Cifuentes, O., L., González, M. J., . . . Orellana, V. G. (2014). Experiencia del Comité de Ética de Investigación en Seres Humanos de la Facultad de Medicina de la Universidad de Chile y los desafíos que impone la nueva legislación chilena en la investigación médica. Revista Medica De Chile, 142, 889-895. https://doi.org/10.4067/S0034-98872014000700009

Pratt, B., & Loff, B. (2014). A framework to link international clinical research to the promotion of justice in global health. Bioethics, 28(8), 387-396. ttps://doi.org/10.1111/bioe.12009

Quilaqueo Rapimán, D., Quintriqueo Millán, S., Riquelme Mella, E. H., & Loncón Antileo, E. (2016). Educación Mapuche y educación escolar en la Araucanía: ¿Doble racionalidad educativa?. Cadernos de Pesquisa, 46(162), 1050-1070. https://doi.org/10.1590/198053143599

Silber, T. J. (1982). Bioethics--An interdisciplinary enterprise. Journal of Religion & Health, 21(1), 21-28. https://doi.org/10.1007/BF02273891

Stiegman, M. L., & Castleden, H. (2015). Leashes and lies: Navigating the colonial tensions of institutional ethics of research involving Indigenous peoples in Canada. International Indigenous Policy Journal, 6(3), 11. https://doi.org/10.18584/iipj.2015.6.3.2

The Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. (2015). CREATE Critical Appraisal Tool. Retrieved from: http://create.joannabriggs.org/?page_id=1476

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Retrieved from: MISSING INFO.

Tobias, J. K., Richmond, C. A. M., & Luginaah, I. (2013). Community-based participatory research (CBPR) with Indigenous communities: Producing respectful and reciprocal research. Journal of Empirical Research on Human Research Ethics, 8(2), 129-140. https://doi.org/10.1525/jer.2013.8.2.129

Tuhiwai Smith, L. (2012). Decolonizing methodologies: Research and Indigenous peoples. Retrieved from http://UNIMELB.eblib.com.au/patron/FullRecord.aspx?p=1426837

Tunón, H., Kvarnström, M., & Lerner, H. (Eds.). (2016). Ethical codes of conduct for research related to Indigenous peoples and local communities–core principles, challenges and opportunities. Ubmeje/Umeå, Sápmi and Sweden. Vaartoe – Centre for Sami Research: Umeå University.

Universidad de Chile. (YEAR). Comité de ética de investigación en seres humanos: Reglamento interno. Retrieved from Santiago, Chile: http://ceish.med.uchile.cl/ley/26.1.2015%20Reglamento%20Interno%20CEISH%20%282%29%20%281%29.pdf

Wexler, L. (2014). Looking across three generations of Alaska Natives to explore how culture fosters indigenous resilience. Transcultural Psychiatry, 51(1), 73-92. https://doi.org/10.1177/1363461513497417

Cómo citar
Ferdinand, A., Oyarce, A. M., Kelaher, M., & Anderson, I. (2018). Reflexiones sobre la ética de la investigación en salud indígena en Chile. Revista Latinoamericana De Bioética, 18(35-2), 162–184. https://doi.org/10.18359/rlbi.3451
Publicado
2018-05-21

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