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Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data Sovereignty Model for Isolate Samples in Research
Journal of Bioethical Inquiry ( IF 1.8 ) Pub Date : 2024-05-27 , DOI: 10.1007/s11673-023-10334-8
A Anderson 1 , M Meher 2 , Z Maroof 2 , S Malua 2 , C Tahapeehi 2 , J Littleton 2 , V Arcus 3 , J Wade 2 , J Park 2
Affiliation  

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa Māori–consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants’ discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model.



中文翻译:


过去、现在和未来结核病分离研究的道德风险 针对研究中分离样本的多元文化数据主权模型



结核病 (TB) 是一种潜在致命的传染病,在新西兰 (NZ),亚洲、太平洋、中东、拉丁美洲和非洲 (MELAA) 以及毛利人受到不同程度的影响。涉及结核病样本基因组测序的医学研究可以更细致地了解疾病菌株及其传播。这可以为高度具体的健康干预措施提供信息。然而,用于研究的结核菌分离样本的收集和管理目前采用单一文化生物医学模型,往往缺乏关键的伦理考虑。本文借鉴了与毛利人一致的定性研究,报告了与新西兰毛利人、太平洋人和阿富汗人群体的初步讨论,这些人的社区受到结核病和结核病耻辱的伤害。参与者的讨论强调了关键问题和意义,这些问题和意义应该为指导方针的制定和更强有力的协商流程提供信息,以管理结核病分离样本的收集和回顾性和未来研究的使用。我们主张道德过程应具有文化差异性和社区生成性,灵活且有意义,并与结核病的身体和象征性影响相关联。我们讨论了土著数据主权、权利和 kāwanatanga(治理)在塑造多元文化数据主权模型中的重要性。

更新日期:2024-05-27
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