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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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Autores principales: Kaladharan, Sid, Vidgen, Miranda E, Pearson, John V, Donoghue, Victoria K, Whiteman, David C, Waddell, Nicola, Pratt, Gregory
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572381/
https://www.ncbi.nlm.nih.gov/pubmed/34732514
http://dx.doi.org/10.1136/bmjgh-2021-007259
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author Kaladharan, Sid
Vidgen, Miranda E
Pearson, John V
Donoghue, Victoria K
Whiteman, David C
Waddell, Nicola
Pratt, Gregory
author_facet Kaladharan, Sid
Vidgen, Miranda E
Pearson, John V
Donoghue, Victoria K
Whiteman, David C
Waddell, Nicola
Pratt, Gregory
author_sort Kaladharan, Sid
collection PubMed
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.
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spelling pubmed-85723812021-11-17 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 BMJ Glob Health Practice 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. BMJ Publishing Group 2021-11-03 /pmc/articles/PMC8572381/ /pubmed/34732514 http://dx.doi.org/10.1136/bmjgh-2021-007259 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Practice
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
title 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_short 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
topic Practice
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572381/
https://www.ncbi.nlm.nih.gov/pubmed/34732514
http://dx.doi.org/10.1136/bmjgh-2021-007259
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