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ResourcesHuman Research EthicsSelf-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)

 


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Abstract

The idea of researchers building the trust of potential participants is sometimes viewed with caution (because of worry it will undermine the voluntary nature of participation) and scepticism (because of the time/resources required, that are needed to actually conduct the research). While such worries might seem reasonable, it is important to recognise: the historical experience of First Peoples and research has not been positive (and some of that ‘historical experience is fairly recent); Indigenous people are generally underrepresented in health research; and building trust is not only sound in terms of the ethical principle of Respect it’s likely to improve the usefulness of the results.

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.
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Keywords: community review, Alaska Native, tribal, ethics, Native American, research, research conduct, trust, accountability
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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), 1324. http://dx.doi.org/10.3390/ijerph14111324
Publisher (Open Access): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5707963/



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