Abstracts
Abstract
In this paper, we review existing ethical guidelines that support Circumpolar Indigenous Peoples’ engagement in health research. For this study, we collated national and regional ethical guidelines addressing health research engaging with Indigenous communities. Our study found that ethical guidelines addressing Indigenous engagement in health research have emerged in Canada and the U.S.A. Currently, there are no Indigenous-specific provisions in national guidelines, or legislation concerning health research engaging Indigenous peoples, in Denmark, Finland, Greenland, Norway, Sweden, or Russia. Where guidelines exist, they show considerable variations. We conclude that guidelines are essential to ensure that research undertaken in Indigenous communities is relevant and beneficial to those communities, is conducted respectfully, and that results are appropriately contextualized and accurate. We believe that our analysis might serve as a checklist to support the development of comprehensive guidelines developed by, or at least in partnership with, Arctic Indigenous communities.
Keywords:
- American Indians,
- Alaska Natives,
- Sāmi,
- First Nations,
- Aboriginal peoples,
- Arctic,
- partnership,
- Canada,
- United States,
- Greenland,
- Denmark,
- Finland,
- Norway,
- Sweden,
- Russia
Download the article in PDF to read it.
Download
Appendices
Bibliography
- Alaska Department of Labour and Workforce Development. (2010). 2010 Census, demographic profiles. Anchorage. http://laborstats.alaska.gov/
- Anderson, I., Griew, R., & McAullay, D. (2003). Ethics guidelines, health research and Indigenous Australians. New Zealand Bioethics Journal, 4(1), 20–29.
- Anderson, M. (2019). Indigenous health research and reconciliation. Canadian Medical Association Journal, 191(34), E930-E931. https://doi.org/10.1503/cmaj.190989
- Angal, J., Petersen, J. M., Tobacco, D., Elliott, A. J., Prenatal Alcohol in SIDS and Stillbirth, N. (2016). Ethics review for a multi-site project involving tribal nations in the Northern Plains. Journal of Empirical Research on Human Research Ethics, 11(2), 91–96. https://doi.org/10.1177/1556264616631657
- 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, 3(2), 33–51. https://doi.org/10.1525/jer.2008.3.2.33
- Baydala, L. T., Worrell, S., Fletcher, F., Letendre, S., Letendre, L., & Ruttan, L. (2013). "Making a place of respect": Lessons learned in carrying out consent protocol with First Nations Elders. Progress in Community Health Partnerships, 7(2), 135–143. https://doi.org/10.1353/cpr.2013.0015
- Beans, J. A., Saunkeah, B., Woodbury, R. B., Ketchum, T. S., Spicer, P. G., & Hiratsuka, V. Y. (2019). Community protections in American Indian and Alaska Native participatory research—a scoping review. Social Sciences, 8(4), 127–144. https://doi.org/10.3390/socsci8040127
- Bracken-Roche, D., Bell, E., Macdonald, M. E., & Racine, E. (2017). The concept of ‘vulnerability’ in research ethics: An in-depth analysis of policies and guidelines. Health Research Policy and Systems, 15(1), 8. https://doi.org/10.1186/s12961-016-0164-6
- Brant Castellano, M., & Reading, J. (2010). Policy writing as dialogue: Drafting an Aboriginal chapter for Canada's Tri-Council Policy Statement: Ethical conduct for research involving humans. International Indigenous Policy Journal, 1(2). https://doi.org/10.18584/iipj.2010.1.2.1
- Broderstad, E. (2014). Implementing Indigenous self-determination: The case of Sámi in Norway. In M. Woons (Ed.), Restoring Indigenous self-determination: Theoretical and practical approaches. E-International Relations.
- Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada. (2014). Chapter 9, research involving the First Nations, Inuit and Métis Peoples of Canada. In Tri-Council Policy Statement, Ethical Conduct for Research Involving Humans. Government of Canada.
- Canadian Journal of Public Health. (2020). Instructions for authors (IFA). Canadian Journal of Public Health.
- Catania, J. A., Lo, B., Wolf, L. E., Dolcini, M. M., Pollack, L. M., Barker, J. C., Wertlieb, S., & Henne, J. (2008). Survey of U.S. Human Research Protection Organizations: Workload and membership. Journal of Empirical Research on Human Research Ethics, 3(4), 57–69. https://doi.org/10.1525/jer.2008.3.4.57
- Chadwick, J. Q., Copeland, K. C., Daniel, M. R., Erb-Alvarez, J. A., Felton, B. A., Khan, S. I., Saunkeah, B. R., Wharton, D. F., & Payan, M. L. (2014). Partnering in research: A national research trial exemplifying effective collaboration with American Indian Nations and the Indian Health Service. American journal of epidemiology, 180(12), 1202–1207. https://doi.org/10.1093/aje/kwu246
- Chu Yang, L., Loyola-Sancheza, A., Hurdb, K., Feruccic, E. D., Craned, L., Healey, B., & Barnabe, C. (2018). Characterization of Indigenous community engagement in arthritis studies conducted in Canada, United States of America, Australia and New Zealand. Seminars in Arthritis and Rheumatism, 49(1), 145–155. https://doi.org/10.1016/j.semarthrit.2018.11.009
- Couzin-Frankel, J. (2010). DNA returned to tribe, raising questions about consent. Science, 328(5978), 558. https://doi.org/10.1126/science.328.5978.558
- Cunningham, C. (2003). An Indigenous New Zealand health researcher's perspective. Monash Bioethics Review, 22(4), 26–30. https://doi.org/10.1007/BF03351401
- Dedats'eetsaa: Tłı̨chǫ Research & Training Institute. (2017). Research Ethics. https://research.tlicho.ca/research-monitoring/research-ethics
- Det Gronlandske Hus. (n.d.). 2021 Grønlands befolkning. https://stat.gl/dialog/main.asp?lang=da&version=202101&sc=BE&subthemecode=O1&colcode=O
- Dutfield, G. (2017). Traditional knowledge, intellectual property and pharmaceutical innovation: What's left to discuss? In M. David & D. Halbert (Eds.), The sage handbook of intellectual property (pp. 649-664). Sage Publishing.
- Dyke, T., & Anderson, W. (2014). A history of health and medical research in Australia. Medical Journal of Australia, 201(1 Suppl), S33–36. https://doi.org/10.5694/mja14.00347
- Eriksen, H., Rautio, A., Johnson, R., Koepke, C., & Rink, E. (2021). Ethical considerations for community-based participatory research with Sami communities in North Finland. Ambio, 50, 1222-1236. https://doi.org/10.1007/s13280-020-01459-w
- European Union. (2018). General Data Protection Regulation. https://gdpr-info.eu/
- Feldman, Y., Gauthier, R., & Schuler, T. (2013). Curbing misconduct in the pharmaceutical industry: Insights from behavioral ethics and the behavioral approach to law. Journal of Law, Medicine & Ethics, 41(3), 620–628. https://doi.org/10.1111/jlme.12071
- Finland Sámediggi. (2016). Procedure for seeking the free, prior, and informed consent of the Sámi from the Sámi Parliament in Finland for research projects dealing with Sámi cultural heritage and traditional knowledge and other activities that have or may have an impact on this heritage and knowledge. Finland Sámediggi https://www.samediggi.fi/wpcontent/uploads//04/FPIC-principles_S%C3%A1mi-Parliament-in-Finland-1.pdf.
- Fitzpatrick, E. F., Martiniuk, A. L., D'Antoine, H., Oscar, J., Carter, M., & Elliott, E. J. (2016). Seeking consent for research with Indigenous communities: A systematic review. BMC Medical Ethics, 17(1), 65. https://doi.org/10.1186/s12910-016-0139-8
- Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health, 84(4), 478–493. https://doi.org/10.1007/s11524-007-9165-7
- Garrison, N. A. (2013). Genomic justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Science, Technology, & Human Values, 38(2), 201–223. https://doi.org/10.1177/0162243912470009
- Garrison, N. A., & Cho, M. K. (2013). Awareness and acceptable practices: IRB and researcher reflections on the Havasupai Lawsuit. AJOB Primary Research, 4(4), 55–63. https://doi.org/10.1080/21507716.2013.770104
- Genuis, S. K., Willows, N., Nation, A. F., & Jardine, C. G. (2015). Partnering with Indigenous student co-researchers: Improving research processes and outcomes. International Journal of Circumpolar Health, 74. https://doi.org/10.3402/ijch.v74.27838
- Government of British Columbia. (2019). A New Path Forward. https://declaration.gov.bc.ca/
- Government of Canada. (2019). First Session, Forty-second Parliament, 64-65-66-67-68 Elizabeth II, 2015-2016-2017-2018-2019 House of Commons of Canada Bill C-92: An Act respecting First Nations, Inuit and Métis children, youth and families, First Reading, February 28, 2019. https://www.parl.ca/DocumentViewer/en/42-1/bill/C-92/first-reading
- Government of Greenland. (2010). Application form for travel in remote areas of Greenland. https://naalakkersuisut.gl/~/media/Nanoq/Files/Attached%20Files/Natur/DK/KNNO_Application_Form_Version%20December%202013.doc
- Government of the Northwest Territories. (1988). The Scientists Act. https://nwtresearch.com/research/nwt-research-policies/scientists-act
- Government of Yukon Cultural Services Branch Department of Tourism and Culture. (2013). Guidebook on scientific research in the Yukon. http://www.tc.gov.yk.ca/publications/Guidebook_on_Scientific_Research_2013.pdf
- Grønlandsmedicinsk Selskab [Greenland Medical Society]. (2015). God Forskningspraksis I Grønland – en Vejledning [Good research practice in Greenland - a guide]. https://gmsnet.dk/test/wpcontent/uploads/2015/10/CodeOfConduct_final.pdf
- Gwynn, J., Lock, M., Turner, N., Dennison, R., Coleman, C., Kelly, B., & Wiggers, J. (2015). Aboriginal and Torres Strait Islander community governance of health research: Turning principles into practice. Australian Journal of Rural Health, 23(4), 235–242. https://doi.org/10.1111/ajr.12182
- 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
- Hiratsuka, V. Y., Beans, J. A., Robinson, R. F., Shaw, J. L., Sylvester, I., & Dillard, D. A. (2017). Self-determination in health research: An Alaska Native example of tribal ownership and research regulation. International Journal of Environmental Research and Public Health, 14(11). https://doi.org/10.3390/ijerph14111324
- Hull, S. C., & Wilson Dine, D. R. (2017). Beyond Belmont: Ensuring respect for AI/AN communities through tribal IRBs, laws, and policies. American Journal of Bioethics, 17(7), 60–62. https://doi.org/10.1080/15265161.2017.1328531
- Humphery, K. (2003). Setting the rules: The development of the NHMRC guidelines on ethical matters in Aboriginal and Torres Strait Islander health research. New Zealand Bioethics Journal, 4(1), 14–19.
- Huria, T., Palmer, S. C., Pitama, S., Beckert, L., Lacey, C., Ewen, S., & Smith, L. T. (2019). Consolidated criteria for strengthening reporting of health research involving Indigenous Peoples: The CONSIDER statement. BMC Medical Research Methodology, 19(1), 173. https://doi.org/10.1186/s12874-019-0815-8
- International Work Group for Indigenous Affairs. (2019). Indigenous peoples in Russia. https://www.iwgia.org/en/russia/3369-iw2019-russia.html
- Inuit Tapiriit Kanatami, Inuit Tuttarvingat, & National Aboriginal Health Organization. (2010). Guidelines for research involving Inuit [Fact sheet]. https://achh.ca/wp-content/uploads/2018/07/Guide_Ethics_Inuit-Fact-Sheet.pdf
- Inuit Tapiriit Kanatami & Nunavut Research Institute. (2007). Negotiating research relationships with Inuit communities: A guide for researchers. Inuit Tapiriit Kanatami and Nunavut Research Institute Ottawa and Iqaluit. https://www.nri.nu.ca/sites/default/files/public/files/06-068%20ITK%20NRR%20booklet.pdf
- Kovach, M. (2009). Indigenous methodologies: Characteristics, conversations, and contexts. University of Toronto Press.
- Kukutai, T., & Taylor, J. (2016). Indigenous data sovereignty: Toward an agenda. Australia National University. https://doi.org/10.22459/CAEPR38.11.2016
- Kvernmo, S., Strøm Bull, K., Broderstad, A. R., Rossvoll, M., Eliassen, B.-M., & Stoor, J. P. A. (2018). Proposal for Ethical Guidelines for Sámi Health Research and Research on Sámi Human Biological Material.
- Kyoon-Achan, G., Lavoie, J. G., Avery Kinew, K., Philips-Beck, W., Ibrahim, N., Sinclair, S., & Katz, A. (2018). Innovating for transformation in First Nations health using community-based participatory research. Qualitative Health Research, 28(7), 1036–1049. https://doi.org/10.1177/1049732318756056
- Last, J. (2019, November 2). What does 'implementing UNDRIP' actually mean? CBC North. https://www.cbc.ca/news/canada/north/implementing-undrip-bc-nwt-1.5344825
- McGrath, J. T. (2004). Translating ethics across the cultural divide in Arctic research: Pittiarniq.
- Moodie, S. (2010). Power, rights, respect and data ownership in academic research with Indigenous Peoples. Environmental Research, 110(8), 818–820. https://doi.org/10.1016/j.envres.2010.08.005
- Morton Ninomiya, M. E., & Pollock, N. J. (2017). Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough. Social Science & Medicine, 172, 28-36. https://doi.org/10.1016/j.socscimed.2016.11.007
- Mosby, I. (2013). Administering colonial science: Nutrition research and human biomedical experimentation in Aboriginal communities and residential schools, 1942–1952. Histoire sociale/Social history, 46(91), 145–172. https://doi.org/10.1353/his.2013.0015
- Naalakkersuisut [Government of Greenland]. (2015). Retningslinjer ved sundhedsforskning og for forskning ved sundhedsvæsenets institutioner [Guidelines for Health Research and for Research at Health Care Institutions]. https://gmsnet.dk/test/wp-content/uploads/2015/10/Bilag-1-Retningslinjer.pdf.
- 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.
- NunatuKavut Community Council Research Advisory Committee (NCC-RAC). (2013). Guidelines for community engagement with NunatuKavut. NunatuKavut Community Council Research Advisory Committee (NCC-RAC) https://nunatukavut.ca/site/uploads/2019/05/guide_for_researchers.pdf
- Olsen, J., Mulvad, G., Pedersen, M. S., Christiansen, T., and Sorensen, P. H. (2003). An ethics committee for medical research in Greenland: History and challenges. Circumpolar Health Supplements, 144–146. https://doi.org/10.3402/ijch.v63i0.17878
- Oneha, M. F., & Beckham, S. (2004). Re-examining community based research protocols. Pacific Health Dialog, 11(1), 102–106.
- Ongomiizwin Indigenous Institute of Health and Healing. (2015). Framework for research engagement with First Nation, Metis, and Inuit Communities. M. A. I. H. Section of First Nations, Faculty of Medicine, University of Manitoba. https://umanitoba.ca/faculties/health_sciences/medicine/media/UofM_Framework_Report_web.pdf
- Pacheco, C. M., Daley, S. M., Brown, T., Filippi, M., Greiner, K. A., & Daley, C. M. (2013). Moving forward: Breaking the cycle of mistrust between American Indians and researchers. American Journal of Public Health, 103(12), 2152–2159. https://doi.org/10.2105/AJPH.2013.301480
- Prior, D. (2007). Decolonising research: A shift toward reconciliation. Nursing Inquiry, 14(2), 162–168. https://doi.org/10.1111/j.1440-1800.2007.00361.x
- Qaujigiartiit Health Research Centre. (2019). Health research ethics checklist. https://www.qhrc.ca/wp-content/uploads/2019/09/Ethics-Review-Checklist-OCT-2019.pdf
- Rainie, S. C., Schultz, J. L., Briggs, E., Riggs, P., & Palmanteer-Holder, N. L. (2017). Data as a strategic resource: Self-determination, governance, and the data challenge for Indigenous nations in the United States. International Indigenous Policy Journal, 8(2), 1–32. https://doi.org/10.18584/iipj.2017.8.2.1
- Resnik, D. B., & Master, Z. (2013). Policies and initiatives aimed at addressing research misconduct in high-income countries. PLOS Medicine, 10(3), e1001406. https://doi.org/10.1371/journal.pmed.1001406
- Resnik, D. B., Rasmussen, L. M., & Kissling, G. E. (2015). An international study of research misconduct policies. Accountability in Research, 22(5), 249–266. https://doi.org/10.1080/08989621.2014.958218
- Sámediggi. (2011). Erklæing fra sameparlamentarikerkonferanse 2011 [Declaration from the Sámi parliamentary conference 2011]. https://www.sametinget.se/78433
- Sámediggi. (2018). Proposal for ethical guidelines for Sámi health research and research on Sámi human biological material. https://uit.no/Content/588355/cache=1534848132000/Proposal+for+Ethical+Guidelines+for+S%C3%A1mi+Health+Research+and+Research+on+S%C3%A1mi+Human+Biological+Material.pdf
- Sámediggi. (2019). Hälsopolitiskt handlingsprogram [Health policy action program].
- Sámediggi. (2020). Sakkyndig, etisk komité for samisk helseforskning. S. Sametinget. https://sametinget.no/barnevern-helse-og-sosial/etiske-retningslinjer-for-samisk-helseforskning-og-kollektiv-samtykke/sakkyndig-etisk-komite-for-samisk-helseforskning/?fbclid=IwAR3YpmffI2cQGJ_9P5qBWGfJCg-nAuyXC4QDKzKsyIt4A2Qf9YbF7p6W4Ag
- Sámiid Riikasearvi. (2019). Riktlinjer vid forsknings- och projektsamarbeten med Sámiid Riikkasearvi (SSR) [Policy regarding research and project collaborations with Sámiid Riikkasearvi].
- Samiskt informationscentrum. (2020). Antalet samer i Sápmi [the amount of Sámi in Sápmi]. http://www.samer.se/samernaisiffror
- Shadian, J. M. (2017). Reimagining political space: The limits of Arctic Indigenous self-determination in international governance? In K. Keil & S. Knecht (Eds.), Governing Arctic change, global perspectives (pp. 43–57). Springer Nature. https://doi.org/10.1057/978-1-137-50884-3_3
- Smith, H. S. (2013). An Alaska Native leader's views on health research. Circumpolar Health Supplements, Supplement 1(72), 108–112.
- Statistics Canada. (2017). Aboriginal peoples in Canada: Key results from the 2016 Census. https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025a-eng.htm
- Statistics Denmark. (2018). People born in Greenland and living in Denmark 1. January by time and parents place of birth. https://www.statistikbanken.dk/BEF5G
- Stoor, J. P. A., Kaiser, N., Jacobsson, L., Renberg, E. S., & Silviken, A. (2015). “We are like lemmings”: Making sense of the cultural meaning(s) of suicide among the Indigenous Sami in Sweden. International Journal of Circumpolar Health, 74, 27669. https://doi.org/10.3402/ijch.v74.27669
- Stordahl, V., Tørres, G., Møllersen, S., & Eira-Åhren, I.-M. (2015). Ethical guidelines for Sami research: The issue that disappeared from the Norwegian Sami Parliament’s agenda? International Journal of Circumpolar Health, 74(1), 1–28. https://doi.org/10.3402/ijch.v74.27024
- Strommer, G. D., & Osborne, S. D. (2015). The history, status, and future of tribal self-governance under the Indian Self-Determination and Education Assistance Act. American Indian Law Review, 39(1), 1–75.
- The Interagency Arctic Research Policy Committee (IARPC). (2018). Principles for conducting research in the Arctic. https://www.iarpccollaborations.org/principles.html
- U.S. Department of Health & Human Services Office for Human Research Protections. (1991). Federal Policy for the Protection of Human Subjects ('Common Rule'). https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html
- U.S. Department of Health & Human Services Office for Human Research Protections. (2018). Revised Common Rule. https://www.hhs.gov/ohrp/regulations-and-policy/regulations/finalized-revisions-common-rule/index.html
- U.S. Department of Health and Human Services Office for Human Research Protections. (2017). International compilation of human research standards. https://www.hhs.gov/ohrp/sites/default/files/international-compilation-of-human-research-standards-2017.pdf
- United Nations. (2007). United Nations declaration on the rights of Indigenous Peoples. United Nations https://www.un.org/development/desa/indigenouspeoples/declaration-on-the-rights-of-indigenous-peoples.html
- United Nations Educational Scientific and Cultural Organization (UNESCO). (2005). Universal Declaration on Bioethics and Human Rights. https://en.unesco.org/themes/ethics-science-and-technology/bioethics-and-human-rights
- Urrego-Mendoza, Z. C., Coral-Palchucan, G. A., Aristizabal-Tobler, C. C., Bello-Urrego, A., & Bastidas-Jacanamijoy, L. O. (2017). [Ethical considerations for health research regarding Colombian Indigenous peoples]. Revista de Salud Pública (Bogota), 19(6), 827–832. https://doi.org/10.15446/rsap.V19n6.55796
- Vukic, A., Rudderham, S., & Misener, R. M. (2009). A community partnership to explore mental health services in First Nations communities in Nova Scotia. Canadian Journal of Public Health, 100(6), 432–435. https://doi.org/10.1007/BF03404339
- Wallis, J. A. M., Riddell, J. K., Smith, C., Silvertown, J., & Pepler, D. J. (2015). Investigating patterns of participation and conversation content in an online mentoring program for Northern Canadian youth. Mentoring and Tutoring: Partnership in Learning, 23(3), 228-247. https://doi.org/10.1080/13611267.2015.1072395
- Weijer, C., Goldsand, G., & Emanuel, E. J. (1999). Protecting communities in research: Current guidelines and limits of extrapolation. Nature Genetics, 23(3), 275–280. https://doi.org/10.1038/15455
- World Medical Association. (1964). WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/
- World Medical Association. (2013). World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. Journal of the American Medical Association, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053