title: Native Hawaiian views on biobanking.
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.
authors.affiliation: University of Hawai`i, 1960 East-west Road, Honolulu, HI, 96822, USA, mtaualii@hawaii.edu.
authors.forename: Maile
authors.initials: M
authors.lastname: Tauali i
authors.forename: Elise Leimomi
authors.initials: EL
authors.lastname: Davis
authors.forename: Kathryn L
authors.initials: KL
authors.lastname: Braun
authors.forename: JoAnn Umilani
authors.initials: JU
authors.lastname: Tsark
authors.forename: Ngiare
authors.initials: N
authors.lastname: Brown
authors.forename: Maui
authors.initials: M
authors.lastname: Hudson
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D018070:Biological Specimen Banks; D035843:Biomedical Research; D019058:Community Networks / Q000458:organization & administration*; D005006:Ethnicity / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D044468:Native Hawaiian or Pacific Islander / Q000523:psychology*; D009369:Neoplasms / Q000517:prevention & control* / Q000523:psychology*; D055815:Young Adult