Beyond platitudes: a qualitative study of Australian Aboriginal people's perspectives on biobanking.

Hermes, A; Wiersma, M; Kerridge, I; Easteal, S; Light, E; Dive, L; Lipworth, W

Beyond platitudes: a qualitative study of Australian Aboriginal people's perspectives on biobanking.

Hermes, A Wiersma, M Kerridge, I Easteal, S Light, E Dive, L

Lipworth, W

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Publisher:: WILEY
Publication Type:: Journal Article
Citation:: Intern Med J, 2021, 51, (9), pp. 1426-1432
Issue Date:: 2021-09

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Field	Value	Language
dc.contributor.author	Hermes, A
dc.contributor.author	Wiersma, M
dc.contributor.author	Kerridge, I
dc.contributor.author	Easteal, S
dc.contributor.author	Light, E
dc.contributor.author	Dive, L https://orcid.org/0000-0001-6655-5138
dc.contributor.author	Lipworth, W
dc.date.accessioned	2022-05-17T00:53:59Z
dc.date.available	2021-01-17
dc.date.available	2022-05-17T00:53:59Z
dc.date.issued	2021-09
dc.identifier.citation	Intern Med J, 2021, 51, (9), pp. 1426-1432
dc.identifier.issn	1444-0903
dc.identifier.issn	1445-5994
dc.identifier.uri	http://hdl.handle.net/10453/157441
dc.description.abstract	BACKGROUND: Biobanks are vital resources for genetics and genomics, and it is broadly recognised that for maximal benefit it is essential that they include samples and data from diverse ancestral groups. The inclusion of First Nations people, in particular, is important to prevent biobanking research from exacerbating existing health inequities, and to ensure that these communities share in the benefits arising from research. AIMS: To explore the perspectives of Australian Aboriginal people whose tissue - or that of their family members - has been stored in the biobank of the National Centre for Indigenous Genomics (NCIG). METHODS: Semi-structured interviews with 42 Aboriginal people from the Titjikala, Galiwinku, Tiwi Islands, Yarrabah, Fitzroy Crossing, Derby, One Arm Point and Mulan communities, as well as a formal discussion with A. Hermes, an Indigenous Community Engagement Coordinator at the NCIG who had conducted the interviews. The interviews and the structured discussion were double coded using a procedure informed by Charmaz's outline of grounded theory analysis and Morse's outline of the cognitive basis of qualitative research. RESULTS: In this article, we report on A. Hermes' interviews with members from the above Aboriginal communities, as well as on her personal views, experiences, and interpretations of the interviews she conducted with other community members. We found that participation in the NCIG biobank raised issues around broken trust, grief and loss, but also - somewhat unexpectedly - was perceived as a source of empowerment, hope and reconnection. CONCLUSIONS: This research reminds us (again) of the need to engage deeply with communities in order to respond appropriately with respect for their cultural values and norms, and to develop culturally relevant policies and processes that enhance the benefits of biobank participation and minimise potential harms.
dc.format	Print
dc.language	eng
dc.publisher	WILEY
dc.relation.ispartof	Intern Med J
dc.relation.isbasedon	10.1111/imj.15223
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1102 Cardiorespiratory Medicine and Haematology, 1103 Clinical Sciences, 1117 Public Health and Health Services
dc.subject.classification	General & Internal Medicine
dc.subject.mesh	Australia
dc.subject.mesh	Biological Specimen Banks
dc.subject.mesh	Female
dc.subject.mesh	Health Services, Indigenous
dc.subject.mesh	Humans
dc.subject.mesh	Native Hawaiian or Other Pacific Islander
dc.subject.mesh	Qualitative Research
dc.title	Beyond platitudes: a qualitative study of Australian Aboriginal people's perspectives on biobanking.
dc.type	Journal Article
utslib.citation.volume	51
utslib.location.activity	Australia
utslib.for	1102 Cardiorespiratory Medicine and Haematology
utslib.for	1103 Clinical Sciences
utslib.for	1117 Public Health and Health Services
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	open_access	*
dc.date.updated	2022-05-17T00:53:57Z
pubs.issue	9
pubs.publication-status	Published
pubs.volume	51
utslib.citation.issue	9

Abstract:

BACKGROUND: Biobanks are vital resources for genetics and genomics, and it is broadly recognised that for maximal benefit it is essential that they include samples and data from diverse ancestral groups. The inclusion of First Nations people, in particular, is important to prevent biobanking research from exacerbating existing health inequities, and to ensure that these communities share in the benefits arising from research. AIMS: To explore the perspectives of Australian Aboriginal people whose tissue - or that of their family members - has been stored in the biobank of the National Centre for Indigenous Genomics (NCIG). METHODS: Semi-structured interviews with 42 Aboriginal people from the Titjikala, Galiwinku, Tiwi Islands, Yarrabah, Fitzroy Crossing, Derby, One Arm Point and Mulan communities, as well as a formal discussion with A. Hermes, an Indigenous Community Engagement Coordinator at the NCIG who had conducted the interviews. The interviews and the structured discussion were double coded using a procedure informed by Charmaz's outline of grounded theory analysis and Morse's outline of the cognitive basis of qualitative research. RESULTS: In this article, we report on A. Hermes' interviews with members from the above Aboriginal communities, as well as on her personal views, experiences, and interpretations of the interviews she conducted with other community members. We found that participation in the NCIG biobank raised issues around broken trust, grief and loss, but also - somewhat unexpectedly - was perceived as a source of empowerment, hope and reconnection. CONCLUSIONS: This research reminds us (again) of the need to engage deeply with communities in order to respond appropriately with respect for their cultural values and norms, and to develop culturally relevant policies and processes that enhance the benefits of biobank participation and minimise potential harms.

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http://hdl.handle.net/10453/157441