Literature DB >> 26507135

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

Rebekah McWhirter1,2, Dianne Nicol3, Julian Savulescu4.   

Abstract

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. To allow the potential benefits of genomics to be more equitably distributed, and minimise potential harms, we recommend five actions: (1) ensure diversity of participants by implementing appropriate protocols at the study design stage; (2) target diseases that disproportionately affect disadvantaged groups; (3) prioritise capacity building to promote Indigenous leadership across research professions; (4) develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and (5) integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects.

Entities:  

Keywords:  Aboriginal and Torres Strait Islander people; Genetic research; Genomics; Indigenous health; Personalised medicine

Mesh:

Year:  2015        PMID: 26507135     DOI: 10.1007/s40592-015-0037-8

Source DB:  PubMed          Journal:  Monash Bioeth Rev        ISSN: 1321-2753


  20 in total

1.  What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era.

Authors:  Francis S Collins
Journal:  Nat Genet       Date:  2004-11       Impact factor: 38.330

2.  Indigenous ways of knowing: implications for participatory research and community.

Authors:  Patricia A L Cochran; Catherine A Marshall; Carmen Garcia-Downing; Elizabeth Kendall; Doris Cook; Laurie McCubbin; Reva Mariah S Gover
Journal:  Am J Public Health       Date:  2007-11-29       Impact factor: 9.308

3.  Navigating the maze: ethics approval pathways for intellectual disability research.

Authors:  Allyson Thomson; Peter Roberts; Alan Bittles
Journal:  J Med Ethics       Date:  2013-08-20       Impact factor: 2.903

4.  Personalised medicine in the genome era.

Authors:  Don Chalmers; Dianne Nicol; Margaret Otlowski; Christine Critchley
Journal:  J Law Med       Date:  2013-03

5.  The impact of genomics on the future of medicine and health.

Authors:  John S Mattick; Marie A Dziadek; Bronwyn N Terrill; Warren Kaplan; Allan D Spigelman; Frank G Bowling; Marcel E Dinger
Journal:  Med J Aust       Date:  2014-07-07       Impact factor: 7.738

6.  Pharmacogenomic technologies: a necessary "luxury" for better global public health?

Authors:  Catherine Olivier; Bryn Williams-Jones
Journal:  Global Health       Date:  2011-08-24       Impact factor: 4.185

7.  Putting science over supposition in the arena of personalized genomics.

Authors:  Colleen M McBride; Sharon Hensley Alford; Robert J Reid; Eric B Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Nat Genet       Date:  2008-08       Impact factor: 38.330

8.  Warfarin pharmacogenetics: an illustration of the importance of studies in minority populations.

Authors:  M A Perera; L H Cavallari; J A Johnson
Journal:  Clin Pharmacol Ther       Date:  2014-03       Impact factor: 6.875

9.  Body ownership and research.

Authors:  Rebekah E McWhirter; Dianne Nicol; Don Chalmers; Joanne L Dickinson
Journal:  J Law Med       Date:  2013-12

10.  Genetic research and aboriginal and Torres Strait Islander Australians.

Authors:  Emma Kowal; Glenn Pearson; Lobna Rouhani; Chris S Peacock; Sarra E Jamieson; Jenefer M Blackwell
Journal:  J Bioeth Inq       Date:  2012-10-12       Impact factor: 1.352

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  4 in total

Review 1.  Australia: regulating genomic data sharing to promote public trust.

Authors:  Lisa Eckstein; Donald Chalmers; Christine Critchley; Ruthie Jeanneret; Rebekah McWhirter; Jane Nielsen; Margaret Otlowski; Dianne Nicol
Journal:  Hum Genet       Date:  2018-08-16       Impact factor: 4.132

Review 2.  Trust in Scholarly Communications and Infrastructure: Indigenous Data Sovereignty.

Authors:  Katharina Ruckstuhl
Journal:  Front Res Metr Anal       Date:  2022-01-12

3.  Dynamic consent and personalised medicine.

Authors:  Liza Goncharov; Hanna Suominen; Matthew Cook
Journal:  Med J Aust       Date:  2022-05-24       Impact factor: 12.776

4.  Provenance and risk in transfer of biological materials.

Authors:  Jane Nielsen; Tania Bubela; Don R C Chalmers; Amber Johns; Linda Kahl; Joanne Kamens; Charles Lawson; John Liddicoat; Rebekah McWhirter; Ann Monotti; James Scheibner; Tess Whitton; Dianne Nicol
Journal:  PLoS Biol       Date:  2018-08-13       Impact factor: 8.029

  4 in total

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