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      Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).

      Haring, Rodney C.; Henry, Whitney Ann; Hudson, Maui; Rodriguez, Elisa M.; Taualii, Maile
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      Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).pdf
      Published version, 390.3Kb
      DOI
       10.1007/s13187-016-1067-5
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      Haring, R. C., Henry, W. A., Hudson, M., Rodriguez, E. M., & Taualii, M. (2018). Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). Journal of Cancer Education, 33(1), 44–51. https://doi.org/10.1007/s13187-016-1067-5
      Permanent Research Commons link: https://hdl.handle.net/10289/12647
      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.
      Date
      2018
      Type
      Journal Article
      Publisher
      Springer US
      Rights
      © The Author(s) 2016. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License.
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      • Māori and Indigenous Studies Papers [129]
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