NDLI: Native Hawaiian Views on Biobanking

Content Provider	Springer Nature Link
Author	Tauali`i, Maile Davis, Elise Leimomi Braun, Kathryn L. Tsark, JoAnn Umilani Brown, Ngiare Hudson, Maui Burke, Wylie
Copyright Year	2014
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.
Starting Page	570
Ending Page	576
Page Count	7
File Format	PDF
ISSN	08858195
Journal	Journal of Cancer Education
Volume Number	29
Issue Number	3
e-ISSN	15430154
Language	English
Publisher	Springer US
Publisher Date	2014-03-29
Publisher Place	New York
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Biobanking Research Ethics Native Hawaiian Genomics Guidelines Disparities Cancer Indigenous Cancer Research Pharmacology/Toxicology
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health Oncology

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
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3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
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