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

journal contribution
posted on 2023-05-18, 14:02 authored by Rebekah McWhirterRebekah McWhirter, Dianne NicolDianne Nicol, Savulescu, J
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.

History

Publication title

Monash Bioethics Review

Volume

33

Issue

2-3

Pagination

203-209

ISSN

1836-6716

Department/School

Menzies Institute for Medical Research

Publisher

Springer

Place of publication

Australia

Rights statement

Copyright 2015 Monash University

Repository Status

  • Restricted

Socio-economic Objectives

Aboriginal and Torres Strait Islander health status and outcomes

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