Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities
Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities
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DOI：
10.1002/ajcp.12360
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发表时间：
2019-07-29
影响因子：
3.1
通讯作者：
Fisher, Celia B.
中科院分区：
文献类型：
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作者：
Parker, Myra;Pearson, Cynthia;Fisher, Celia B.
负责在不同社区内开展研究的个人迫切需要符合社区价值观的研究伦理培训材料。为了提高满足当地人类受试者保护的能力，我们创建了研究性土著社区健康伦理培训 (rETHICS)，这是一个与美洲印第安人和阿拉斯加原住民 (AI/AN) 背景、文化和社区层面的伦理价值观和原则相一致的培训课程。从贝尔蒙特报告和定义人类受试者研究的共同规则 (46 CFR 45) 开始，作者召集了三个不同的专家小组 (N = 37) 来确定部落社区中共同的土著研究价值观和原则。随后，最终的基于文化的课程在 48 名 AI/AN 人员中进行了测试，其中 39 人还记录了情况汇报访谈。使用主题分析，我们对专家小组讨论和参与者汇报的定性反馈进行编码，以评估内容的有效性。参与者确定了确保 AI/AN 特定研究培训课程的文化基础所需的五个基本结构。其中包括确保该模块： (a) 在 AI/AN 历史背景下构建； (b) 反映土著道德价值观； (c) 将 AI/AN 文化考虑因素与道德程序具体联系起来； (d) 促进土著道德的发展； (e) 为决策提供基于土著的道德工具。利用基于社区的咨询和参与者的反馈，形成了基于文化的培训课程，教授使用人工智能/人工神经网络进行研究的研究伦理原则和程序。该课程是免费提供的，所使用的基于社区的流程可以适应其他文化群体。
Individuals responsible for carrying out research within their diverse communities experience a critical need for research ethics training materials that align with community values. To improve the capacity to meet local human subject protections, we created the research Ethics Training for Health in Indigenous Communities (rETHICS), a training curriculum aligned within American Indian and Alaska Native (AI/AN) context, culture, and community-level ethical values and principles. Beginning with the Belmont Report and the Common Rule that defines research with human subjects (46 CFR 45), the authors convened three different expert panels (N = 37) to identify Indigenous research values and principles common across tribal communities. The resulting culturally grounded curriculum was then tested with 48 AI/AN individuals, 39 who also had recorded debriefing interviews. Using a thematic analysis, we coded the qualitative feedback from the expert panel discussions and the participant debriefings to assess content validity. Participants identified five foundational constructs needed to ensure cultural-grounding of the AI/AN-specific research training curriculum. These included ensuring that the module was: (a) framed within an AI/AN historical context; (b) reflected Indigenous moral values; (c) specifically linked AI/AN cultural considerations to ethical procedures; (d) contributed to a growing Indigenous ethics; and (e) provided Indigenous-based ethics tools for decision making. Using community-based consultation and feedback from participants led to a culturally grounded training curriculum that teaches research ethical principles and procedures for conducting research with AI/ANs. The curriculum is available for free and the community-based process used can be adapted for other cultural groups.