Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)
Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)
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DOI：
10.1007/s13187-016-1067-5
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发表时间：
2018-02-01
影响因子：
1.6
通讯作者：
Taualii, Maile
中科院分区：
文献类型：
--
作者：
Haring, Rodney C.;Henry, Whitney Ann;Taualii, Maile
在文化上不同的社区进行生物医学研究往往是一个挑战。参与的潜在障碍是因为科学是以缺乏文化认可的形式呈现的。调查也可能无法显示对社区有益的相关性，或将社区纳入真正的伙伴关系。这些问题使美洲原住民社会的生物医学研究历史变得复杂。许多土著群体的历史创伤有时会转变为当代的挑战，特别是在生物库研究的招募和参与方面。这项研究的参与者包括Haudenosaunee的成员，长屋的人。包括Haudenosaunee在内的美洲原住民忍受着该国最严重的健康差距。这些包括癌症，肥胖和糖尿病的高发病率，这可能至少部分与遗传易感性有关。Haudenosaunee城市人口的结果分享了如何改善生物标本，癌症和其他健康相关临床试验的招募策略的反应。采用了混合方法，社区的反应表明，必须通过相互尊重的伙伴关系建立信任;推广文化上适当的征聘材料;需要更好地了解同意和签字程序;需要简明扼要的摘要表;希望获得社区成员理解的信息。讨论项目还包括国际土著对生物库和遗传相关健康差异研究的看法。
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.