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Journal of Cancer Education

, Volume 29, Issue 3, pp 570–576 | Cite as

Native Hawaiian Views on Biobanking

  • Maile Tauali`i
  • Elise Leimomi Davis
  • Kathryn L. BraunEmail author
  • JoAnn Umilani Tsark
  • Ngiare Brown
  • Maui Hudson
  • Wylie Burke
Article

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.

Keywords

Biobanking Research Ethics Native Hawaiian Genomics Guidelines Disparities Cancer Indigenous 

Notes

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.

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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Maile Tauali`i
    • 1
  • Elise Leimomi Davis
    • 1
  • Kathryn L. Braun
    • 1
    • 2
    Email author
  • JoAnn Umilani Tsark
    • 2
  • Ngiare Brown
    • 3
  • Maui Hudson
    • 4
  • Wylie Burke
    • 5
  1. 1.University of Hawai`iHonoluluUSA
  2. 2.`Imi Hale, Papa Ola LokahiHonoluluUSA
  3. 3.National Aboriginal Community Controlled Health OrganizationCanberraAustralia
  4. 4.Te Kotahi Research InstituteUniversity of WaikatoHamiltonNew Zealand
  5. 5.University of WashingtonSeattleUSA

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