Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

Beans, Julie A.; Saunkeah, Bobby; Woodbury, R. Brian; Ketchum, Terry; Spicer, Paul; Hiratsuka, Vanessa Y.

doi:10.3390/socsci8040127

Cited by 27 publications

(22 citation statements)

References 70 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…There is a sizeable literature describing the benefits to communities of governing and engaging in research. In particular, the use of participatory research approaches as a means to promote community engagement has been widely recommended in health-related research involving Indigenous populations (Beans et al, 2019). Similarly, a substantive and growing literature describes the rights of self-governance and self-determination held by Indigenous populations in the U.S. and Canada and the legal and political force these rights give tribal IRBs and other individuals and groups empowered by tribal governments to regulate research (Hiratsuka et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

et al. 2019

Self Cite

View full text Add to dashboard Cite

Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the components of data management—including data collection, analysis, security and storage, sharing, dissemination, and withdrawal—are met. A scoping review was conducted to better understand the terms of data management employed in health-related research involving Indigenous communities in the United States and Canada. Methods: PubMed, Embase, PsychINFO, and Web of Science were searched using terms related to the populations and topics of interest. Results were screened and articles deemed eligible for inclusion were extracted for content on data management, community engagement, and community-level research governance. Results: The search strategy returned 734 articles. 31 total articles were extracted, of which nine contained in-depth information on data management and underwent detailed extraction. All nine articles reported the development and implementation of data management tools, including research ethics codes, data-sharing agreements, and biobank access policies.These articles reported that communities were involved in activities and decisions related to data collection (n=7), data analysis (n=5), data-sharing (n=9), dissemination (n=7), withdrawal (n=4), and development of data management tools (n=9). The articles also reported that communities had full or shared ownership of (n=5), control over (n=9), access to (n=1), and possession of data (n=5).All nine articles discussed the role of community engagement in research and community-level research governance as means for aligning the terms of data management with the values, needs, and interests of communities. Conclusions: There is need for more research and improved reporting on data management in health-related research involving Indigenous peoples in the United States and Canada. Findings from this review can provide guidance for the identification of data management terms and practices that may be acceptable to Indigenous communities considering participation in health-related research.

show abstract

Section: Discussionmentioning

confidence: 99%

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

et al. 2019

Self Cite

View full text Add to dashboard Cite

show abstract

“…Tribal nations have a right to government-to-government relationships with the federal government and may invoke their own processes of research review and apply their own guiding principles to making decisions about initiatives that affect them. 20,21 For 2 years, important partnership decisions, meaningful recruitment activities, and opportunities for AI/ANs were postponed until the NIH initiated a formal tribal consultation on the All of Us Research Program in 2019 after considerable input from tribal nations and advocates. 17,19 Some outstanding concerns remain, particularly about data access, ownership, and the rights of tribal nations.…”

Section: Nih All Of Us Research Programmentioning

confidence: 99%

Holding Space for All of Us

Lucero

Roubideaux

2020

AMA Journal of Ethics

View full text Add to dashboard Cite

Negative experiences and misunderstanding are common in tribalacademic research partnerships. The Holding Space: A Guide for Partners in Tribal Research draws on the concepts of governance, trust, and culture to strengthen relationships, honor tribal sovereignty, counter histories of opportunistic research, and recognize all ways of knowing. We apply the Holding Space toolkit concepts to the All of Us Research Program and call on all research studies funded by the federal government to honor governance, trust, and culture in research partnerships with tribal nations. Need for Tribal-Academic Partnerships While social and health research has addressed some health challenges in American Indian and Alaska Native (AI/AN) communities, 1,2 health disparities persist 3 and are not easily resolved. 2,4 For example, diabetes prevention and control require strategy implementation at the individual, family, and community level. 5 Additionally, many AI/ANs and tribal nations have long-standing mistrust of research and research policies shaped by interactions with opportunistic academic researchers doing federally funded work without tribal input or benefit sharing. 4,6,7 Participatory or community-engaged research is one approach to reducing mistrust and ensuring tribal communities' equal partnership in research. 8,9 Strong tribal-academic research partnerships that adhere to principles of participatory research can play a key role in developing the multilevel and contextualized solutions required to achieve health equity for AI/ANs. 9,10 The National Institutes of Health (NIH) and Patient-Centered Outcomes Research Institute acknowledge the scientific value of inclusive, partnered research, 11,12 and the Common Rule requires federally funded researchers to comply with state, local, and tribal laws. 13 However, theory-practice gaps-manifest in discounting tribal sovereignty, paying little attention to cultural protocols, or minimizing community concerns raised by research-can cause or reintroduce mistrust and exacerbate disparities. For example, one recent research incident with the Havasupai Tribe demonstrates the need for meaningful tribal-academic partnerships in genetics research. 14

show abstract

“…Even with these abuses and continued missteps, some ANAI communities have recognized a benefit of participating in genetic research studies. Participation in genetic research, however, is prefaced with the expectation that research in ANAI communities requires community consultation [8][9][10]. Moreover, genetic research in ANAI communities must address areas of known disparities, clearly delineate potential health benefits and risks, and provide adequate protections against individual and group harm [11,12].…”

Section: Introductionmentioning

confidence: 99%

An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

et al. 2020

Self Cite

View full text Add to dashboard Cite

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.

show abstract

Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

Cited by 27 publications

References 70 publications

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

Holding Space for All of Us

An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

Contact Info

Product

Resources

About