dc.contributor.author |
Anderson, A |
|
dc.contributor.author |
Meher, M |
|
dc.contributor.author |
Maroof, Z |
|
dc.contributor.author |
Malua, S |
|
dc.contributor.author |
Tahapeehi, C |
|
dc.contributor.author |
Littleton, J |
|
dc.contributor.author |
Arcus, V |
|
dc.contributor.author |
Wade, J |
|
dc.contributor.author |
Park, J |
|
dc.coverage.spatial |
Netherlands |
|
dc.date.accessioned |
2024-07-11T03:45:03Z |
|
dc.date.available |
2024-07-11T03:45:03Z |
|
dc.date.issued |
2024-05-27 |
|
dc.identifier.citation |
(2024). Journal of bioethical inquiry. |
|
dc.identifier.issn |
1176-7529 |
|
dc.identifier.uri |
https://hdl.handle.net/2292/69153 |
|
dc.description.abstract |
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. |
|
dc.language |
eng |
|
dc.publisher |
Springer Nature |
|
dc.relation.ispartofseries |
Bioethical Inquiry |
|
dc.rights |
Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. |
|
dc.rights.uri |
https://researchspace.auckland.ac.nz/docs/uoa-docs/rights.htm |
|
dc.rights.uri |
https://creativecommons.org/licenses/by/4.0/ |
|
dc.subject |
Indigenous data sovereignty |
|
dc.subject |
Isolate samples |
|
dc.subject |
Kaupapa Māori research |
|
dc.subject |
Tuberculosis research |
|
dc.subject |
50 Philosophy and Religious Studies |
|
dc.subject |
5001 Applied Ethics |
|
dc.subject |
Clinical Research |
|
dc.subject |
Prevention |
|
dc.subject |
Rare Diseases |
|
dc.subject |
Tuberculosis |
|
dc.subject |
Infection |
|
dc.subject |
3 Good Health and Well Being |
|
dc.subject |
1801 Law |
|
dc.subject |
2201 Applied Ethics |
|
dc.subject |
2203 Philosophy |
|
dc.title |
Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data Sovereignty Model for Isolate Samples in Research |
|
dc.type |
Journal Article |
|
dc.identifier.doi |
10.1007/s11673-023-10334-8 |
|
pubs.begin-page |
1 |
|
dc.date.updated |
2024-06-08T23:10:50Z |
|
dc.rights.holder |
Copyright: The authors |
en |
dc.identifier.pmid |
38801628 (pubmed) |
|
pubs.author-url |
https://link.springer.com/article/10.1007/s11673-023-10334-8 |
|
pubs.end-page |
12 |
|
pubs.publication-status |
Published online |
|
pubs.subtype |
Journal Article |
|
pubs.elements-id |
1029803 |
|
pubs.org-id |
Arts |
|
pubs.org-id |
Medical and Health Sciences |
|
pubs.org-id |
Te Kupenga Hauora Maori |
|
pubs.org-id |
Social Sciences |
|
pubs.org-id |
Anthropology |
|
dc.identifier.eissn |
1872-4353 |
|
dc.identifier.pii |
10.1007/s11673-023-10334-8 |
|
pubs.record-created-at-source-date |
2024-06-09 |
|
pubs.online-publication-date |
2024-05-27 |
|