Native Hawaiian views on biobanking
Open accessAbstract
Genomic science represents a new frontier for health research and will provide important tools for personalizing health care. Biospecimen-based research is an important mechanism for expanding the genomic research capacity, and indigenous peoples are a target of biospecimen-based research due to their relative isolation and the potential to discover rare or unique genotypes. This study explored Native Hawaiian perceptions of and expectations for biobanking. Ten discussion groups were conducted with Native Hawaiians (N = 92), who first heard a presentation on biobanking. Six themes emerged: (1) biobank governance by the Native Hawaiian community, (2) research transparency, (3) priority of Native Hawaiian health concerns, (4) leadership by Native Hawaiian scientists accountable to community, (5) re-consenting each time specimen is used, and (6) education of Native Hawaiian communities. Considered together, these findings suggest that biobanking should be guided by six principles that comprise "G.R.E.A.T. Research" (Governance, Re-consent, Education, Accountability, Transparency, Research priorities). These recommendations are being shared with biobanking facilities in Hawai'i as they develop protocols for biobanking participation, governance, and education. These findings also inform researchers and indigenous peoples throughout the world who are working on biobanking and genomic research initiatives in their nations.
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The Native Hawaiian "G.R.E.A.T. Research" framework for biobanking and biospecimen research exemplifies the goal of maximizing benefits while educating and empowering Indigenous Peoples.
“This goal is exemplified in the Native Hawaiian “G.R.E.A.T. Research” (Governance, Re-consent, Education, Accountability, Transparency, Research priorities) framework for biobanking and biospecimen research (Tauali‘i et al., 2014).”
From Indigenous Peoples and research: self-determination in research governance (2023) · cites this paper as Tauali‘i et al., 2014
Implementation of "G.R.E.A.T. Research" requires researchers to ensure that their research goals are understood by the community, that findings are shared and not siloed, and that the community benefits from the collaboration.
“Implementation of “G.R.E.A.T. Research” requires researchers to ensure that their research goals are understood by the community, that findings are shared and not siloed, and that the community benefits from the collaboration.”
From Indigenous Peoples and research: self-determination in research governance (2023) · cites this paper as Tauali‘i et al., 2014
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Research works printed but not linked: 12
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Indigenous Peoples and research: self-determination in research governance
Garba, I., Sterling, R., Plevel, R., Carson, W., Cordova-Marks, F. M., Cummins, J., Curley, C., David-Chavez, D., Fernandez, A., Hiraldo, D., et al. (2023) · Frontiers in Research Metrics and Analytics · doi:10.3389/frma.2023.1272318 · Cited by 56 · see citing works
Self-citation
- Authors
- Tauali`i, M., Davis, E. L., Braun, K. L., Tsark, J. U., Brown, N., Hudson, M., & Burke, W.
- Affiliations
- University of Hawaiʻi at Mānoa (US)
- Papa Ola Lokahi (US)
- University of Waikato (NZ)
- University of Washington (US)
- Corresponding author
- Braun, Kathryn L.
- Venue
- Journal of Cancer Education
- Published
- 2014-03-29
- Volume
- 29
- Issue
- 3
- Pages
- 570-576
- ISSN
- 0885-8195 (ISSN-L)
- 1543-0154
- PMC
- PMC4133296
- OpenAlex
- W2039485159
- Cited by
- 48
- References
- 0
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 7 · 2023: 17 · 2022: 2 · 2021: 3 · 2020: 3 · 2019: 5 · 2018: 2 · 2017: 1 · 2016: 1 · 2015: 4
- FWCI
- 1.99
- Type
- journal article
- Language
- en
- Update notices
- correction (2019-11-14)
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Cancer Education (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Cancer Institute (U54CA153459)
- National Institute on Minority Health and Health Disparities (U54MD007584)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Health › Indigenous Health, Education, and Rights
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Keywords
- biobanking, Native Hawaiians, indigenous peoples, genomic research, community perceptions, biobank governance, re-consent, research transparency, community education, research accountability, community leadership
- MeSH terms
- Adolescent, Adult, Aged, Ethnicity, Female, Humans, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Neoplasms, Biological Specimen Banks, Community Networks, Biomedical Research, Native Hawaiian or Pacific Islander, Native Hawaiian or Other Pacific Islander, Young Adult
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