title: Views of biobanking research among Alaska native people: the role of community context.
abstract: BACKGROUND
  Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs.
  
  
  OBJECTIVE
  To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners.
  
  
  METHODS
  We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach.
  
  
  RESULTS
  We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health.
  
  
  CONCLUSIONS
  This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.
authors: Southcentral Foundation.
authors: Vanessa
authors: V
authors: Hiratsuka
authors: Jennifer
authors: J
authors: Brown
authors: Denise
authors: D
authors: Dillard
mesh_terms: D000293:Adolescent; D000328:Adult; D000413:Alaska; D018070:Biological Specimen Banks; D035843:Biomedical Research; D055812:Community-Based Participatory Research; D005260:Female; D006801:Humans; D004930:Inuit / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011287:Prejudice; D011639:Public Opinion; D012922:Social Change; D055815:Young Adult