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Supplement 1, 2013

Navigating the cultural geography of indigenous peoples’ attitude toward genetic research: the Ohana (family) heart project

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Article: 21346 | Published online: 05 Aug 2013

References

  • American Heart Association. Heart Disease and Stroke Statistics — 2007 Update. 2007. Dallas, Texas: American Heart Association.
  • Joseph SM, Cedars AM, Ewald GA, Geltman EM, Mann DL. Acute decompensated heart failure: contemporary medical management. Tex Heart Inst J. 2009; 36: 510–20.
  • Kaholokula JK, Saito E, Mau MK, Latimer, Seto TB. Pacific Islanders’ perspectives on heart failure management. Patient Educ Couns. 2008; 70: 281–91.
  • Center for Rural Health. Native aging facts: congestive heart failure among older American Indians and Alaska Natives. Grand Forks, ND: University of North Dakota; 2010 [cited 2013 Mar 3]. Available from: http://ruralhealth.und.edu/pdf/fs_heartfailure.pdf.
  • US National Institutes of Health: National Heart, Lung, and Blood Institute. Morbidity & mortality: 2012 chart book on cardiovascular, lung, and blood disease. 2012
  • AIHW: Penm E. Cardiovascular disease and its associated risk factors in Aboriginal and Torres Strait Islander peoples 2004–05. 2008; Canberra, Australia: Australian Institute of Health and Welfare. Cardiovascular disease series no. 29. Cat. no. CVD 41.
  • McGrady M, Krum H, Carrington MJ, Stewart S, Zeitz C, Lee GA, etal. Heart failure, ventricular dysfunction and risk factor prevalence in Australian Aboriginal peoples: the Heart of the Heart Study. Heart. 2012; 98: 1562–7.
  • Mau MK, Asao K, Efird J, Saito E, Ratner R, Hafi M, etal. Risk factors associated with methamphetamine use and heart failure among native Hawaiians and other Pacific Island peoples. Vasc Health Risk Manag. 2009; 5: 45–52.
  • Bowekaty MB. Perspectives on research in American Indian communities. Jurimetrics. 2002; 42: 145–8.
  • Walters KL, Simoni JM. Decolonizing strategies for mentoring American Indians and Alaska Natives in HIV and mental health research. Am J Public Health. 2009; 99: S71–6.
  • Manson SM. The Barrow Alcohol Study: emphasis on its ethical and procedural aspects. Am Indian Alsk Native Ment Health Res. 1989; 2: 5–6.
  • Cook BP. A call for respect and equality for indigenous scholarship in Hawaiian health. Pac Health Dialog. 2001; 8: 368–74.
  • Singeo L. The patentability of the Native Hawaiian genome. Am J Law Med. 2007; 33: 119–39.
  • Weiss KM., Richard H. Ward, Ph.D. (June 7, 1943–February 14, 2003): wild ride of the Valkyries. Am J Hum Genet. 2003; 72: 1079–83.
  • Chang RM, Lowenthal PH. Genetic research and the vulnerability of Native Hawaiians. Pac Health Dialog. 2001; 8: 364–7.
  • Andrews LB, Buenger N, Bridge J, Rosenow L, Stoney D, Gaenssien RE, etal. Ethics. Constructing ethical guidelines for biohistory. Science. 2004; 304: 215–6.
  • Wiwchar D. Bad blood. Ha-Shilth-Sa. 2000; 7–9.
  • Association of Hawaiian Civic Clubs. Resolution urging the University of Hawai'i to cease development of the Hawaiian genome project or other patenting or licensing of Native Hawaiian genetic material until such time as the Native Hawaiian people have been consulted and given their full, prior and informed consent to such project. 2003
  • Williams RL, Wilging CE, Quntero G, Kalishman S, Sussman AL, Freeman WL, etal. Ethics of health research in communities: perspectives from the southwestern United States. Ann Fam Med. 2010; 8: 433–9.
  • Hiratsuka VY, Brown JK, Hoeft TJ, Dillard DA. Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens. 2012; 71 18642. doi: 10.3402/ijch.v71i0.18642 Int J Circumpolar Health.
  • Buchwald D, Mendoza-Jenkins V, Croy C, McGough H, Bezdek M, Spicer P. Attitudes of urban American Indians and Alaska Natives regarding participation in research. J Gen Intern Med. 2006; 21: 648–51.
  • Christopher S, Watts V, McCormick AKHG, Young S. Building and maintaining trust in a community-based participatory research partnership. Am J Public Health. 2008; 98: 1398–406.
  • Whittemore R, Chase SK, Mandle CL. Validity in qualitative research. Qual Health Res. 2001; 11: 522–37.
  • Santos L. Genetic research in native communities. Prog Community Health Partnersh. 2008; 2: 321–7.
  • MacIntosh C. Indigenous self-determination and research on human genetic material: a consideration of the relevance of debates on patents and informed consent, and the political demands on researchers. Health Law J. 2005; 13: 213–51.
  • Nacapoy AH, Kaholokula JK, West MR, Dillard AY, Leake A, Kekauoha BP, etal. Partnerships to address obesity disparities in Hawai'i: the PILI 'Ohana Project. Hawaii Med J. 2008; 67: 237–41.
  • Sahota P. Community-based participatory research in American Indian and Alaskan Native communities. 2010. Washington DC: NCAI Policy Research Center.
  • Christopher S, Saha R, Lachapelle P, Jennings D, Colclough Y, Cooper Y, etal. Applying indigenous community-based participatory research principles to partnership development in health disparities research. Fam Community Health. 2011; 34: 246–55.
  • Boyer BB, Mohatt GV, Pasker RL, Drew EM, McGlone KK. Sharing results from complex disease genetics studies: a community based participatory research approach. Int J Circumpolar Health. 2007; 66: 19–30.