A Anderson, M Meher, Z Maroof, S Malua, C Tahapeehi, J Littleton, V Arcus, J Wade, J Park
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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.
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.
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.
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