ArticleInternational journal of circumpolar health2013
Navigating the cultural geography of indigenous peoples' attitude toward genetic research: the Ohana (family) heart project.
Article in International journal of circumpolar health, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed, 8 citations in OpenAlex.
- Advancing stroke genetics in Hawai'i and the Pacific Islands.Frontiers in stroke · 2023Article
- Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.Journal of community genetics · 2019Article
- Insights in Public Health:Hawai'i journal of medicine & public health : a journal of Asia Pacific Medicine & Public Health · 2019Article
- Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review.Journal of health care for the poor and underserved · 2019Article
- Engaging Pacific Islanders in Research: Community Recommendations.Progress in community health partnerships : research, education, and action · 2016Article
- Community-Based Participatory Research Integrates Behavioral and Biological Research to Achieve Health Equity for Native Hawaiians.International journal of environmental research and public health · 2015Article
- Bedside-to-Bench Translational Research for Chronic Heart Failure: Creating an Agenda for Clients Who Do Not Meet Trial Enrollment Criteria.Clinical Medicine Insights. Cardiology · 2015Review
Corrections and comments
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundLittle 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.
objectiveTo 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.
methodsEighty-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.
resultsfour 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.
conclusionsIt 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.
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Registered trials
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