Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples
In health and medical research, guidelines are a set of statements and recommendations, whereby experts or stakeholders assess published literature to generate practical advice for a specific audience. This emphasis on guidelines development with expert consultation and published literature is not p...
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Online Access: | http://dx.doi.org/10.1136/bmjgh-2021-007259 https://syndication.highwire.org/content/doi/10.1136/bmjgh-2021-007259 |
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crjcrbmj:10.1136/bmjgh-2021-007259 2024-06-23T07:52:51+00:00 Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples Kaladharan, Sid Vidgen, Miranda E Pearson, John V Donoghue, Victoria K Whiteman, David C Waddell, Nicola Pratt, Gregory QIMR Berghofer Medical Research Institute Queensland Health National Health and Medical Research Council 2021 http://dx.doi.org/10.1136/bmjgh-2021-007259 https://syndication.highwire.org/content/doi/10.1136/bmjgh-2021-007259 en eng BMJ https://creativecommons.org/licenses/by/4.0/ BMJ Global Health volume 6, issue 11, page e007259 ISSN 2059-7908 journal-article 2021 crjcrbmj https://doi.org/10.1136/bmjgh-2021-007259 2024-05-24T13:16:28Z In health and medical research, guidelines are a set of statements and recommendations, whereby experts or stakeholders assess published literature to generate practical advice for a specific audience. This emphasis on guidelines development with expert consultation and published literature is not practical or inclusive when working in disciplines with minimal data and addressing issues that concern under-represented communities. Here we describe the process used for developing guidelines for the conduct of genomic research projects in partnership with Aboriginal and Torres Strait Islander peoples. A new technology with individual and community level ethical and social implications, and First Nations peoples with cultural and community expectations for research. We developed the guidelines through a consultation process that used participatory action research to engage with various stakeholders during multiple rounds of tailored activities. The end product, ‘Genomic Partnerships: Guidelines for Genomics Research with Aboriginal and Torres Strait Islander peoples of Queensland’ reflects the needs of the end-users and perspectives of the Aboriginal and Torres Strait Islander peoples, communities and organisations that participated. Through this process, we have identified recommendations for developing guidelines with other under-represented communities. Article in Journal/Newspaper First Nations The BMJ Queensland BMJ Global Health 6 11 e007259 |
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The BMJ |
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English |
description |
In health and medical research, guidelines are a set of statements and recommendations, whereby experts or stakeholders assess published literature to generate practical advice for a specific audience. This emphasis on guidelines development with expert consultation and published literature is not practical or inclusive when working in disciplines with minimal data and addressing issues that concern under-represented communities. Here we describe the process used for developing guidelines for the conduct of genomic research projects in partnership with Aboriginal and Torres Strait Islander peoples. A new technology with individual and community level ethical and social implications, and First Nations peoples with cultural and community expectations for research. We developed the guidelines through a consultation process that used participatory action research to engage with various stakeholders during multiple rounds of tailored activities. The end product, ‘Genomic Partnerships: Guidelines for Genomics Research with Aboriginal and Torres Strait Islander peoples of Queensland’ reflects the needs of the end-users and perspectives of the Aboriginal and Torres Strait Islander peoples, communities and organisations that participated. Through this process, we have identified recommendations for developing guidelines with other under-represented communities. |
author2 |
QIMR Berghofer Medical Research Institute Queensland Health National Health and Medical Research Council |
format |
Article in Journal/Newspaper |
author |
Kaladharan, Sid Vidgen, Miranda E Pearson, John V Donoghue, Victoria K Whiteman, David C Waddell, Nicola Pratt, Gregory |
spellingShingle |
Kaladharan, Sid Vidgen, Miranda E Pearson, John V Donoghue, Victoria K Whiteman, David C Waddell, Nicola Pratt, Gregory Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
author_facet |
Kaladharan, Sid Vidgen, Miranda E Pearson, John V Donoghue, Victoria K Whiteman, David C Waddell, Nicola Pratt, Gregory |
author_sort |
Kaladharan, Sid |
title |
Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
title_short |
Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
title_full |
Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
title_fullStr |
Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
title_full_unstemmed |
Ask the people: developing guidelines for genomic research with Aboriginal and Torres Strait Islander peoples |
title_sort |
ask the people: developing guidelines for genomic research with aboriginal and torres strait islander peoples |
publisher |
BMJ |
publishDate |
2021 |
url |
http://dx.doi.org/10.1136/bmjgh-2021-007259 https://syndication.highwire.org/content/doi/10.1136/bmjgh-2021-007259 |
geographic |
Queensland |
geographic_facet |
Queensland |
genre |
First Nations |
genre_facet |
First Nations |
op_source |
BMJ Global Health volume 6, issue 11, page e007259 ISSN 2059-7908 |
op_rights |
https://creativecommons.org/licenses/by/4.0/ |
op_doi |
https://doi.org/10.1136/bmjgh-2021-007259 |
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BMJ Global Health |
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6 |
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11 |
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e007259 |
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1802644257672003584 |