过去、现在和未来肺结核隔离病例研究的伦理利害关系 逐步建立隔离病例研究的多元文化数据主权模式。

IF 1.8 3区 哲学 Q2 ETHICS
A Anderson, M Meher, Z Maroof, S Malua, C Tahapeehi, J Littleton, V Arcus, J Wade, J Park
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引用次数: 0

摘要

肺结核(TB)是一种可能致命的传染病,在新西兰奥特亚罗瓦地区(NZ),亚裔、太平洋裔、中东裔、拉美裔、非洲裔(MELAA)和毛利人受到了不公平的影响。通过对肺结核样本进行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途径。这可以为非常具体的健康干预措施提供依据。然而,目前用于研究的结核病分离样本的收集和管理都是以单一文化的生物医学模式为基础的,往往缺乏关键的伦理考虑因素。本文通过与毛利人一致的定性研究(kaupapa Māori-consistent),报告了与新西兰毛利人、太平洋岛民和阿富汗人群体的初步讨论。参与者的讨论强调了一些关键问题和意义,这些问题和意义应该成为制定指导方针和更有力的咨询程序的依据,以管理结核病分离样本的收集和使用,包括回顾性收集和在未来的研究中使用。我们认为,伦理程序应具有文化上的细微差别、由社区产生、灵活而有意义,并与结核病的物理和象征性影响相关联。我们讨论了土著数据主权、权利和 kāwanatanga(管理权)在形成多元文化数据主权模式中的意义。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data Sovereignty Model for Isolate Samples in Research.

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.

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来源期刊
Journal of Bioethical Inquiry
Journal of Bioethical Inquiry 医学-医学:伦理
CiteScore
5.20
自引率
8.30%
发文量
67
审稿时长
>12 weeks
期刊介绍: The JBI welcomes both reports of empirical research and articles that increase theoretical understanding of medicine and health care, the health professions and the biological sciences. The JBI is also open to critical reflections on medicine and conventional bioethics, the nature of health, illness and disability, the sources of ethics, the nature of ethical communities, and possible implications of new developments in science and technology for social and cultural life and human identity. We welcome contributions from perspectives that are less commonly published in existing journals in the field and reports of empirical research studies using both qualitative and quantitative methodologies. The JBI accepts contributions from authors working in or across disciplines including – but not limited to – the following: -philosophy- bioethics- economics- social theory- law- public health and epidemiology- anthropology- psychology- feminism- gay and lesbian studies- linguistics and discourse analysis- cultural studies- disability studies- history- literature and literary studies- environmental sciences- theology and religious studies
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