Literature DB >> 23007173

Ethical genetic research in Indigenous communities: challenges and successful approaches.

Rebekah E McWhirter1, Djapirri Mununggirritj, Dipililnga Marika, Joanne L Dickinson, John R Condon.   

Abstract

Indigenous populations, in common with all populations, stand to benefit from the potential of genetic research to lead to improvements in diagnostic and therapeutic tools for a wide range of complex diseases. However, many Indigenous communities, especially ones that are isolated, are not included in genetic research efforts. This situation is largely a consequence of the challenges of ethically conducting genetic research in Indigenous communities and compounded by Indigenous peoples' negative past experiences with genetic issues. To examine ways of addressing these challenges, we review one investigation of a cancer cluster in remote Aboriginal communities in Arnhem Land, Australia. Our experiences demonstrate that genetic research can be both ethically and successfully conducted with Indigenous communities by respecting the authority of the community, involving community members, and including regular community review throughout the research process.
Copyright © 2012 Elsevier Ltd. All rights reserved.

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Year:  2012        PMID: 23007173     DOI: 10.1016/j.molmed.2012.08.003

Source DB:  PubMed          Journal:  Trends Mol Med        ISSN: 1471-4914            Impact factor:   11.951


  13 in total

Review 1.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  J Glob Oncol       Date:  2019-03

Review 2.  Seeking consent for research with indigenous communities: a systematic review.

Authors:  Emily F M Fitzpatrick; Alexandra L C Martiniuk; Heather D'Antoine; June Oscar; Maureen Carter; Elizabeth J Elliott
Journal:  BMC Med Ethics       Date:  2016-10-22       Impact factor: 2.652

Review 3.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  JCO Glob Oncol       Date:  2019-03-07

Review 4.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  J Glob Oncol       Date:  2019-03-07

5.  Genomics in research and health care with Aboriginal and Torres Strait Islander peoples.

Authors:  Rebekah McWhirter; Dianne Nicol; Julian Savulescu
Journal:  Monash Bioeth Rev       Date:  2015 Jun-Sep

6.  Community engagement for big epidemiology: deliberative democracy as a tool.

Authors:  Rebekah E McWhirter; Christine R Critchley; Dianne Nicol; Don Chalmers; Tess Whitton; Margaret Otlowski; Michael M Burgess; Joanne L Dickinson
Journal:  J Pers Med       Date:  2014-11-20

7.  The picture talk project: Aboriginal community input on consent for research.

Authors:  Emily Fm Fitzpatrick; Gaynor Macdonald; Alexandra Lc Martiniuk; June Oscar; Heather D'Antoine; Maureen Carter; Tom Lawford; Elizabeth J Elliott
Journal:  BMC Med Ethics       Date:  2019-01-29       Impact factor: 2.652

Review 8.  A scoping review: The utility of participatory research approaches in psychology.

Authors:  Leah Levac; Scott Ronis; Yuriko Cowper-Smith; Oriana Vaccarino
Journal:  J Community Psychol       Date:  2019-08-23

9.  Inclusion of Indigenous Australians in biobanks: a step to reducing inequity in health care.

Authors:  Imogen Elsum; Callum McEwan; Emma E Kowal; Yvonne Cadet-James; Margaret Kelaher; Lynn Woodward
Journal:  Med J Aust       Date:  2019-06-03       Impact factor: 7.738

10.  Consanguineous marriages in the genetic counseling centers of Isfahan and the ethical issues of clinical consultations.

Authors:  Narges Nouri; Nayereh Nouri; Samane Tirgar; Elham Soleimani; Vida Yazdani; Farzaneh Zahedi; Bagher Larijani
Journal:  J Med Ethics Hist Med       Date:  2017-12-10
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