过去,现在和未来结核病的伦理风险 孤立研究 走向多元文化数据主权模型 孤立研究样本的研究
A Anderson1, M Meher2, Z Maroof2
1Te Kupenga Hauora Māori, University of Auckland, Auckland, New Zealand. a.anderson@auckland.ac.nz.
Journal of bioethical inquiry
|May 27, 2024
概括
这项研究解决了新西兰结核病 (TB) 研究样本采集的伦理问题. 需要文化相关的指导方针,以确保社区参与,并尊重土著数据主权.
科学领域:
- 基因组学就是基因组学.
- 传染性疾病 传染性疾病
- 公共卫生道德 公共卫生道德
背景情况:
- 结核病 (TB) 不成比例地影响了新西兰的特定种族群体.
- 结核病分离物的基因组测序为有针对性的干预提供了对菌株和传播的洞察力.
- 目前用于研究的结核病样本采集缺乏文化上适当的伦理考虑.
研究的目的:
- 探索社区对结核病收集和治理的观点,为研究孤立样本.
- 在结核病研究中倡导文化细微和社区驱动的伦理框架.
- 将土著数据主权原则纳入研究治理模型.
主要方法:
- 定性 kaupapa 毛利的一致的研究设计.
- 与新西兰的毛利,太平洋和阿富汗社区进行初步讨论.
- 分析社区对结核病样本采集和使用的担忧.
主要成果:
- 参与者强调了对当前研究实践的重大担忧.
- 社区的贡献对于制定结核病样本管理的伦理准则至关重要.
- 需要灵活,有意义和文化敏感的咨询流程.
结论:
- 伦理性结核病研究需要文化为基础的,社区产生的指导方针.
- 尊重土著数据主权和政府对于多元文化数据治理至关重要.
- 未来的研究治理必须解决结核病和耻辱的物理和象征性影响.
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