Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study

Cynthia Triplett, Burgundy J Fletcher, Riley I Taitingfong, Ying Zhang, Tauqeer Ali, Lucila Ohno-Machado, Cinnamon S Bloss, Cynthia Triplett, Burgundy J Fletcher, Riley I Taitingfong, Ying Zhang, Tauqeer Ali, Lucila Ohno-Machado, Cinnamon S Bloss

Abstract

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.

Keywords: community-based participatory research (CBPR); health information privacy; indigenous populations; tribal consultation.

© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association.

Figures

Figure 1.
Figure 1.
Who in the community should be included in the research?
Figure 2.
Figure 2.
When, where, and how should we conduct this research?

References

    1. Kaiser J. Why NIH is beefing up its data sharing rules after 16 years. Science 2019. doi: 10.1126/science.aba1768. Accessed March 2022.
    1. Office of Intergovernmental and External Affairs (IEA). Tribal Consultation. Accessed August 10, 2020.
    1. NIH Tribal Health Research Office. Guidance on the Implementation of the HHS Tribal Consultation Policy. , 2020.
    1. NIH Office of Science Policy. NIH Tribal Consultation Report: NIH Draft Policy for Data Management and Sharing. Accessed March 2022.
    1. National Institutes of Health. Final NIH Policy for Data Management and Sharing. Accessed March 2022.
    1. NCAI Policy Research Center and MSU Center for Native Health Partnerships. “Walk Softly and Listen Carefully”: Building Research Relationships with Tribal Communities. Washington, DC, and Bozeman, MT; 2012: 1–36.
    1. NCAI Policy Research Center. Research that Benefits Native People: A Guide for Tribal Leaders. Washington, DC: National Congress of American Indians Policy Research Center; 2009: 1–32.
    1. United States Indigenous Data Sovereignty Network. Promoting Indigenous Data Sovereignty Through Decolonizing Data and Indigenous Data Governance. Accessed March 2022.
    1. Carroll SR, Rodriguez-Lonebear D, Martinez A. Indigenous data governance: Strategies from United States Native Nations. Data Sci J 2019; 18 (31): 1–15.
    1. Kukutai T, Taylor J. Indigenous Data Sovereignty: Toward an Agenda. Acton, Australia: ANU Press; 2016.
    1. Tsosie KS, Yracheta JM, Kolopenuk JA, et al. We have “gifted” enough: indigenous genomic data sovereignty in precision medicine. Am J Bioeth 2021; 21 (4): 72–5.
    1. University of Oklahoma Center for American Indian Health Research. About Strong Heart Study. , 2020.
    1. NHLBI. Strong Heart Study (SHS). Accessed March 2022.
    1. University of Oklahoma Center for American Indian Health Research. Principles of Community-based Research. , 2020.
    1. UC San Diego School of Medicine Department of Biomedical Informatics. Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations. Accessed March 2022.
    1. Pacheco CM, Daley SM, Brown T, et al. Moving forward: breaking the cycle of mistrust between American Indians and researchers. Am J Public Health 2013; 103 (12): 2152–9.
    1. Claw KG, Anderson MZ, Begay RL, et al.; Summer internship for INdigenous peoples in Genomics (SING) Consortium. A framework for enhancing ethical genomic research with Indigenous communities. Nat Commun 2018; 9 (1): 2957.
    1. Brockie TN, Dana-Sacco G, López MM, et al. Essentials of research engagement with Native American tribes: Data collection reflections of a tribal research team. Prog Community Health Partnersh 2017; 11 (3): 301–7.
    1. Drabiak-Syed K. Lessons from Havasupai tribe v. Arizona state university board of regents: recognizing group, cultural, and dignity harms as legitimate risks warranting integration into research practice. J Health Biomed Law 2010; 6 (2): 175–226.
    1. Noe TD, Manson SM, Croy C, et al. The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities. Ethn Dis 2007; 17(1 Suppl 1): S6–14.
    1. Israel BA, Eng E, Schulz AJ, et al. Methods for Community-Based Participatory Research for Health. San Francisco, CA: John Wiley & Sons; 2013.
    1. Wallerstein NB, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract 2006; 7 (3): 312–23.
    1. Israel BA, Schulz AJ, Parker EA, et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998; 19 (1): 173–202.
    1. Harry D. The Human Genome Diversity Project. Abya Yala News 1993; 8 (4): 13–5.
    1. Foulks EF. Misalliances in the Barrow Alcohol Study. Am Indian Alsk Native Ment Health Res 1989; 2 (3): 7–17.
    1. Garrison NA. Genomic justice for Native Americans: impact of the Havasupai case on genetic research. Sci Technol Human Values 2013; 38 (2): 201–23.
    1. Brown T, Katz B. Change by Design: How Design Thinking Transforms Organizations and Inspires Innovation. Vol 20091. New York, NY: HarperBusiness; 2019.
    1. Taitingfong R, Bloss CS, Triplett C, et al. A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States. J Am Med Inform Assoc 2020; 27 (12): 1987–98.
    1. Piquemal N. Free and informed consent in research involving Native American communities. Am Indian Cult Res J 2001; 25 (1): 65–79.
    1. Tsosie KS, Claw KG, Garrison NA. Considering “Respect for Sovereignty” beyond the Belmont report and the common rule: ethical and legal implications for American Indian and Alaska native peoples. Am J Bioeth 2021; 21 (10): 27–30.
    1. Smith LT. Decolonizing Methodologies: Research and Indigenous Peoples. London, England: Zed Books Ltd; 2012.
    1. Wilson SS. Research as Ceremony: Articulating an Indigenous Research Paradigm. Melbourne: Monash University; 2004.
    1. Wallerstein N, Duran B, Oetzel J, et al. Community-Based Participatory Research for Health: Advancing Social and Health Equity. San Francisco, CA: John Wiley & Sons; 2017.
    1. Hull SC, Wilson Diné DR. Beyond Belmont: ensuring respect for AI/AN communities through tribal IRBs, laws, and policies. Am J Bioeth 2017; 17 (7): 60–2.
    1. Tsosie KS, Yracheta JM, Dickenson D. Overvaluing individual consent ignores risks to tribal participants. Nat Rev Genet 2019; 20 (9): 497–8.
    1. Claw KG, Dundas N, Parrish MS, et al. Perspectives on genetic research: results from a survey of Navajo Community Members. Front Genet 2021; 12: 1–11.

Source: PubMed

Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

3
Abonner