Abstract
Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.
Highlights
Research in minority, underserved, ethnically diverse, or culturally distinct communities is often a challenge
This paper focused on Native American responses only
Perhaps the most alarming finding is the lack of translational movement across minority and underrepresented populations in the past clinical and biospecimen research literature
Summary
Research in minority, underserved, ethnically diverse, or culturally distinct communities is often a challenge. Whatever the cause of hesitation, it is an important topic, a topic that has direct relevance to minority populations, their people, and their future These issues are not totally missing in published scientific literature, they are not presented often enough to be visible in many research institutions or within community settings. Historical mistrust traces back just a few generations, deriving from Bgift blankets^ infected with smallpox [25]. I hope it will have the desired effect^ [16] This deep historical trauma among many Native American communities often transcends into contemporary challenges in both this population’s recruitment to and participation in clinical trials as well as biobanking research
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