Vawer May, Kaina Patsy, Leonard Ann, Ogata Michael, Blackburn Beth, Young Malia, Seto Todd B
Center for Outcomes Research and Evaluation, The Queen's Medical Center, Honolulu, HI 96813, USA.
Int J Circumpolar Health. 2013 Aug 5;72. doi: 10.3402/ijch.v72i0.21346. eCollection 2013.
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.
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.
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.
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.
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.
关于包括夏威夷原住民（NH）在内的原住民群体中心力衰竭负担的了解甚少。最近对NH社区基因研究的担忧与美国印第安人、阿拉斯加原住民和加拿大第一民族社区提出的类似担忧相呼应，并引发了关于进行涉及生物样本研究的最佳方式的问题。
为了帮助我们规划一项研究，以调查NH社区中心力衰竭发病率和结局的差异，我们进行了一项定性研究，以检查该社区对包括生物样本采集在内的心力衰竭研究的期望。
85名有个人或家族心力衰竭病史、居住在夏威夷州一个地理上孤立社区的NH参与了16次半结构化访谈中的1次。访谈以标准方式进行，采用开放式问题，旨在探索他们对一项包括生物样本采集的心力衰竭研究的期望。通过反复阅读和编码对访谈进行主题分析。
关于使用生物样本进行心力衰竭研究，他们的期望有四个关键主题：（a）需要促进研究者与社区之间的信任；（b）与社区建立伙伴关系以确定需求和目标；（c）研究者与社区需要互利；（d）确定代表社区的关键声音。参与者对研究表示强烈支持。然而，这种支持的力度与研究团队和社区之间关系的强度直接相关。用于基因分析的生物样本采集本身并非明确关注的问题或障碍。
开展一项包括生物样本采集的心力衰竭研究似乎是可行的。然而，成功可能需要满足社区的期望，包括需要建立在信任和互利基础上的长期伙伴关系，以及代表社区的关键声音。
