Abstract
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.
Similar content being viewed by others
Change history
14 November 2019
The original version of this article unfortunately contained a mistake. The name of ���Maile Taualii��� is now corrected in the author group of this article.
References
Vaught JB, Lockhart N, Thiel KS, Schneider KA (2007) Ethical, legal, and policy issues: dominating the biospecimen discussion. Cancer Epidemiol Biomarkers Prev 16:2521–2523
Taniguchi N K, Taualii M, Maddock J (2012) A comparative analysis of indigenous research guidelines to inform genomic research in indigenous communities. International Indigenous Policy J 3(1) Retrieved from: http://ir.lib.uwo.ca/iipj/vol3/iss1/6
Mello MM, Wolf LE (2010) The Havasupai Indian Tribe Case: lessons for research involving stored biologic samples. NEJM 36:204–207
Tano ML (2006) Interrelationships amount native peoples, genetic research, and the landscape: need for future research into ethical, legal, and social issues. J Law Med Ethics 24:301–309
Tsosie R (2007) Cultural challenges to biotechnology: Native American genetic resources and the concept of cultural harm. J Law Med Ethics 25:296–411
Santos LA (2008) Indigenous concerns about genetic research. Prog Community Health Partnersh 4:321–327
Singeo L (2007) The patentability of the Native Hawaiian genome. Am J Law Med 33:119–139
Association of Hawaiian Civic Clubs (AHCC) (2004) Resolution urging the AHCC to support education in genetics and the ethical issues surrounding genetic studies that impact on Native Hawaiians. Adopted November 13, 2004 at the 45th Annual Convention of the AHCC, Maui HI.
Hiratsuka V, Brown J, Dillard D (2012) Views of biobanking research among Alaska native people: the role of community context. Prog Community Health Partn 6(2):131–139
Hawai‘i Department of Business, Economic Development, and Tourism (2012). Population of Hawai‘i. http://dbedt.hawaii.gov/economic/databook/db2011/. Accessed 21 September 2013.
Braun KL, Tsark J, Santos L, Aitaoto N, Chong C (2006) Building Native Hawaiian capacity in cancer research and programming: the Legacy of ‘Imi Hale. Cancer 107(8 Suppl):2082–2090
Fong M, Braun KL, Tsark J (2003) Improving Native Hawaiian health through community-based participatory research. Calif J Health Promot 1(1):136–148
Fong M, Braun KL, Chang M (2006) Native Hawaiian preferences for informed consent and disclosure of results from genetic research. J Cancer Educ 21(Suppl):S47–S52
Hutchison AJ, Johnston LH, Breckon JD (2009) Using QSR-NVivo to facilitate the development of a grounded theory project: an account of a worked example. Int J Soc Res Methodol 13:283–302
QSR International Pty Ltd. NVivo qualitative data analysis software. Version 10.
Pukui MK, Haertig EW, Lee CA, McDermott J (1972) Nana I ke kumu (Look to the source). Hui Hanai, Honolulu
Rachul C, McGuire A, Caufield T (2012) Public perceptions and biobanking: what does the research really say? Stud Ethics Law Technol 6:3
Haga SB, Beskow LM (2008) Ethical, legal, and social implications of biobanks for genetics research. Adv Genet 60:505–544
Dressler LG (2007) Biospecimen “ownership”: counterpoint. Cancer Epidemiol Biomarkers Prev 16:190–191
Meslin EM (2010) The value of using top-down and bottom-up approaches for building trust and transparency in biobanking. Publ Health Genomics 13:207–214
Acknowledgments
This study was supported by the National Cancer Institute, Parent Grant, ‘Imi Hale Native Hawaiian Cancer Network (U54CA153459).
Conflict of Interest Disclosures
All authors have no financial disclosures.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Tauali`i, M., Davis, E.L., Braun, K.L. et al. Native Hawaiian Views on Biobanking. J Canc Educ 29, 570–576 (2014). https://doi.org/10.1007/s13187-014-0638-6
Published:
Issue Date:
DOI: https://doi.org/10.1007/s13187-014-0638-6