title: Navigating the cultural geography of indigenous peoples' attitude toward genetic research: the Ohana (family) heart project.
abstract: BACKGROUND
  Little is known about the burden of heart failure among indigenous populations, including Native Hawaiians (NH). Recent concerns about genetic research in the NH community resonate with similar concerns raised by American Indian, Alaskan Native and Canadian First Nations communities and have raised questions about the best way to proceed with studies involving biological specimens.
  
  
  OBJECTIVE
  To help us plan a study to investigate disparities in heart failure incidence and outcomes in a NH community, we performed a qualitative study to examine the community's expectations for heart failure research that includes the collection of biological specimens.
  
  
  METHODS
  Eighty-five NH with a personal or family history of heart failure, who lived in a geographically isolated community in the state of Hawai'i participated in 1 of 16 semi-structured interviews. Interviews were conducted in a standard manner, with open-ended questions designed to explore their expectations for a heart failure research study that included the collection of biological specimens. Interviews were analyzed thematically through iterative readings and coding.
  
  
  RESULTS
  four key themes regarding heart failure research with the use of biological specimens characterized their expectations: (a) Need to foster trust between investigator and community; (b) Establish a partnership with the community to identify needs and goals; (c) Need for mutual benefit to investigator and community; (d) Identification of a key voice to represent the community. Participants expressed strong support for research. However, the strength of that support was directly related to the strength of the relationship between the research team and the community. The collection of biological specimens for genetic analyses was not an explicit concern or barrier per se.
  
  
  CONCLUSIONS
  It appears feasible to conduct a heart failure research study that includes the collection of biological samples. However, success will likely require addressing the community's expectations, including the need for a long-term partnership built on trust and mutual benefit, and a key voice to represent the community.
authors: Center for Outcomes Research and Evaluation, The Queen's Medical Center, Honolulu, HI 96813, USA.
authors: May
authors: M
authors: Vawer
authors: Patsy
authors: P
authors: Kaina
authors: Ann
authors: A
authors: Leonard
authors: Michael
authors: M
authors: Ogata
authors: Beth
authors: B
authors: Blackburn
authors: Malia
authors: M
authors: Young
authors: Todd B
authors: TB
authors: Seto
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015992:Body Mass Index; D055812:Community-Based Participatory Research / Q000458:organization & administration*; D003299:Cooperative Behavior; D003469:Culture; D005260:Female; D020022:Genetic Predisposition to Disease; D036281:Genetic Research; D006254:Hawaii; D007722:Health Knowledge, Attitudes, Practice; D006333:Heart Failure / Q000235:genetics*; D006801:Humans; D007198:Indians, North American; D008297:Male; D008875:Middle Aged; D035502:Trust; D055815:Young Adult
keywords: Native Hawaiian; biological specimens; heart failure; interviews; qualitative; screening
references: Hawaii Med J. 2008 Sep;67(9):237-41
references: 18853898
references: Jurimetrics. 2002 Winter;42(2):145-8
references: 15119328
references: Am J Law Med. 2007;33(1):119-39
references: 17547357
references: Ann Fam Med. 2010 Sep-Oct;8(5):433-9
references: 20843885
references: Fam Community Health. 2011 Jul-Sep;34(3):246-55
references: 21633218
references: Am J Public Health. 2008 Aug;98(8):1398-406
references: 18556605
references: Patient Educ Couns. 2008 Feb;70(2):281-91
references: 18068939
references: Am J Public Health. 2009 Apr;99 Suppl 1:S71-6
references: 19246668
references: J Gen Intern Med. 2006 Jun;21(6):648-51
references: 16808751
references: Pac Health Dialog. 2001 Sep;8(2):368-74
references: 12180517
references: Heart. 2012 Nov;98(21):1562-7
references: 22888160
references: Vasc Health Risk Manag. 2009;5(1):45-52
references: 19436660
references: Am J Hum Genet. 2003 May;72(5):1079-83
references: 12772707
references: Int J Circumpolar Health. 2007 Feb;66(1):19-30
references: 17451131
references: Health Law J. 2005;13:213-51
references: 17044328
references: Science. 2004 Apr 9;304(5668):215-6
references: 15073360
references: Tex Heart Inst J. 2009;36(6):510-20
references: 20069075
references: Prog Community Health Partnersh. 2008 Winter;2(4):321-7
references: 20208312
references: Pac Health Dialog. 2001 Sep;8(2):364-7
references: 12180516
references: Qual Health Res. 2001 Jul;11(4):522-37
references: 11521609
references: Int J Circumpolar Health. 2012 May 22;71:18642
references: 22663942