Views of Biobanking Research Among Alaska Native People: The Role of Community Context
Views of Biobanking Research Among Alaska Native People: The Role of Community Context
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DOI：
10.1353/cpr.2012.0025
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发表时间：
2012-06-01
影响因子：
1.1
通讯作者：
Dillard, Denise
中科院分区：
文献类型：
--
作者：
Hiratsuka, Vanessa;Brown, Jennifer;Dillard, Denise
背景：使用生物库中保存的临床数据和样本进行研究，有可能解决少数群体社区的健康差异。然而，关于使用这些样本进行研究的伦理和文化考虑值得关注。关于阿拉斯加原住民（ANs）如何看待生物库研究的文献主要由理论论文和立场声明组成，其中有限的系统信息是从广泛的ANs.Objectives收集的：探索阿拉斯加的AN社区成员和领导者对生物库研究的看法，使用基于社区的参与式研究方法，与部落和联邦合作伙伴一起。我们接触了部落卫生组织（THO），以合作并指导他们所在地区的研究。聘请社区联络员领导研究招募。在14个地点举办了29次重点小组讨论会，有82名社区成员和81名部落领袖参加。数据进行了分析，使用扎根theory approach.Results：我们确定了五个主题，有助于参与者对生物库的看法：（1）以前的经验与研究和医疗保健，（2）污名化，相关性和适用性，（3）政府和文化变革的影响，（4）对未知的未来技术的能力，（5）造福子孙后代。受访者提出AN特定的文化关注沿着全球的伦理问题，以及潜在的承诺，研究在改善AN health.Conclusions：这项研究提供了考虑与AN社区合作的研究人员在规划研究和公共卫生监测项目。研究结果也对其他少数民族社区受到过去的研究和其他社会变化的影响。
Background: Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs.Objectives: To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners.Methods: We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach.Results: We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health.Conclusions: This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.