Literature DB >> 23188401

Genetic research and aboriginal and Torres Strait Islander Australians.

Emma Kowal1, Glenn Pearson, Lobna Rouhani, Chris S Peacock, Sarra E Jamieson, Jenefer M Blackwell.   

Abstract

While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of "victim-blaming" approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted.

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Year:  2012        PMID: 23188401     DOI: 10.1007/s11673-012-9391-x

Source DB:  PubMed          Journal:  J Bioeth Inq        ISSN: 1176-7529            Impact factor:   1.352


  39 in total

1.  Genetic research and culturally specific risks: one size does not fit all.

Authors:  M W Foster; R R Sharp
Journal:  Trends Genet       Date:  2000-02       Impact factor: 11.639

2.  Cultural issues in genetic research with American Indian and Alaskan Native people.

Authors:  Malcolm B Bowekaty; Dena S Davis
Journal:  IRB       Date:  2003 Jul-Aug

3.  Indigenous by definition, experience, or world view.

Authors:  Chris Cunningham; Fiona Stanley
Journal:  BMJ       Date:  2003-08-23

Review 4.  Racialized genetics and the study of complex diseases: the thrifty genotype revisited.

Authors:  Yin C Paradies; Michael J Montoya; Stephanie M Fullerton
Journal:  Perspect Biol Med       Date:  2007       Impact factor: 1.416

5.  A model agreement for genetic research in socially identifiable populations.

Authors:  M W Foster; D Bernsten; T H Carter
Journal:  Am J Hum Genet       Date:  1998-09       Impact factor: 11.025

6.  Whose genes are they? The Human Genome Diversity Project.

Authors:  L Lone Dog
Journal:  J Health Soc Policy       Date:  1999

Review 7.  DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities.

Authors:  Laura Arbour; Doris Cook
Journal:  Community Genet       Date:  2006

8.  Population genetics and benefit sharing.

Authors:  B M Knoppers
Journal:  Community Genet       Date:  2000

9.  Machado-Joseph disease in east Arnhem Land, Australia: chromosome 14q32.1 expanded repeat confirmed in four families.

Authors:  T Burt; B Currie; C Kilburn; A K Lethlean; K Dempsey; I Blair; A Cohen; G Nicholson
Journal:  Neurology       Date:  1996-04       Impact factor: 9.910

10.  Factors that influence characteristics of genetic biobanks.

Authors:  Jennifer E Sanner; Lorraine Frazier
Journal:  J Nurs Scholarsh       Date:  2007       Impact factor: 3.176

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  8 in total

1.  Cases and culture : the benefits and risks of narrating "life as lived".

Authors:  Michael A Ashby; Leigh E Rich
Journal:  J Bioeth Inq       Date:  2012-11-13       Impact factor: 1.352

Review 2.  Hunter-gatherer genomics: evolutionary insights and ethical considerations.

Authors:  Richard J Bankoff; George H Perry
Journal:  Curr Opin Genet Dev       Date:  2016-07-09       Impact factor: 5.578

3.  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

4.  Breast Cancer in Australian Indigenous Women: Incidence,zzm321990Mortality, and Risk Factors

Authors:  Kriscia A Tapia; Gail Garvey; Mark Mc Entee; Mary Rickard; Patrick Brennan
Journal:  Asian Pac J Cancer Prev       Date:  2017-04-01

Review 5.  Trust in Scholarly Communications and Infrastructure: Indigenous Data Sovereignty.

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

Review 6.  Indigenous knowledge around the ethics of human research from the Oceania region: A scoping literature review.

Authors:  Etivina Lovo; Lynn Woodward; Sarah Larkins; Robyn Preston; Unaisi Nabobo Baba
Journal:  Philos Ethics Humanit Med       Date:  2021-10-09       Impact factor: 2.464

Review 7.  The commercialization of biospecimens from Indigenous Peoples: A scoping review of benefit-sharing.

Authors:  Tarlynn Tone-Pah-Hote; Nicole Redvers
Journal:  Front Med (Lausanne)       Date:  2022-08-04

8.  First genome-wide association study in an Australian aboriginal population provides insights into genetic risk factors for body mass index and type 2 diabetes.

Authors:  Denise Anderson; Heather J Cordell; Michaela Fakiola; Richard W Francis; Genevieve Syn; Elizabeth S H Scaman; Elizabeth Davis; Simon J Miles; Toby McLeay; Sarra E Jamieson; Jenefer M Blackwell
Journal:  PLoS One       Date:  2015-03-11       Impact factor: 3.240

  8 in total

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