Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review

doi:10.1186/s44263-024-00102-0

. 2024 Oct 25;2(1):72.

doi: 10.1186/s44263-024-00102-0.

Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review

Rebecca Dal Pra^#¹, Penny O'Brien^#², Huong X T Nguyen¹, Joanne Luke^{1

3}, Robyn A Smith¹, Adrienne Withall^{4

5}, Kylie Radford^{4

6}, Louise M Lavrencic^{5

6

7}, Rosie Watson^{1

8}, Leon Flicker^{9

10}, Dina Logiudice¹

Affiliations

¹ Department of Medicine, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Royal Melbourne Hospital, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
² Department of Medicine, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Royal Melbourne Hospital, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia. penny.obrien@unimelb.edu.au.
³ Centre for Health Policy, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
⁴ School of Psychology, Faculty of Science, University of New South Wales, New South Wales, Sydney, Australia.
⁵ University of New South Wales Ageing Futures Institute, University of New South Wales, New South Wales, Sydney, Australia.
⁶ Neuroscience Research Australia (NeuRA), New South Wales, Sydney, Australia.
⁷ School of Population Health, Faculty of Medicine and Health, University of New South Wales, New South Wales, Sydney, Australia.
⁸ Department of Population Health and Immunity, Walter and Eliza Hall Institute of Medical Research, Victoria, Melbourne, Australia.
⁹ Royal Perth Hospital, Perth, WA, Australia.
¹⁰ Western Australian Centre for Health & Ageing, Medical School, University of Western Australia, Perth, WA, Australia.

^# Contributed equally.

PMID: 39681973
PMCID: PMC11622903
DOI: 10.1186/s44263-024-00102-0

Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review

Rebecca Dal Pra et al. BMC Glob Public Health. 2024.

. 2024 Oct 25;2(1):72.

doi: 10.1186/s44263-024-00102-0.

Authors

Affiliations

¹ Department of Medicine, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Royal Melbourne Hospital, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
² Department of Medicine, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Royal Melbourne Hospital, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia. penny.obrien@unimelb.edu.au.
³ Centre for Health Policy, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
⁴ School of Psychology, Faculty of Science, University of New South Wales, New South Wales, Sydney, Australia.
⁵ University of New South Wales Ageing Futures Institute, University of New South Wales, New South Wales, Sydney, Australia.
⁶ Neuroscience Research Australia (NeuRA), New South Wales, Sydney, Australia.
⁷ School of Population Health, Faculty of Medicine and Health, University of New South Wales, New South Wales, Sydney, Australia.
⁸ Department of Population Health and Immunity, Walter and Eliza Hall Institute of Medical Research, Victoria, Melbourne, Australia.
⁹ Royal Perth Hospital, Perth, WA, Australia.
¹⁰ Western Australian Centre for Health & Ageing, Medical School, University of Western Australia, Perth, WA, Australia.

^# Contributed equally.

PMID: 39681973
PMCID: PMC11622903
DOI: 10.1186/s44263-024-00102-0

Abstract

Background: Indigenous peoples globally continue to be underrepresented in biomarker, genomic, and biobanking research. The aim of this study was to identify core components of culturally safe and ethical biomarker and genomic research with Indigenous peoples in Australia, Aotearoa/New Zealand, Canada and the USA.

Methods: A scoping review with a systematic search strategy was conducted utilising electronic databases MEDLINE, EMBASE, PsychINFO, CINAHL and Global Health. Key search terms included 'biomarkers' and 'genomics' research involving Indigenous peoples in relation to ethical and legal principles of respect, sovereignty, governance and existing policies. Original research studies published from the year 2000 to the 1st of August 2023 were reviewed in a systematic manner. Components of culturally safe and ethical research processes were identified and synthesised descriptively. The quality of included studies was assessed using an Aboriginal and Torres Strait Islander Quality Appraisal Tool through an Indigenous lens.

Results: Seven interrelated research components were identified from seventeen studies as core processes to enhance the cultural safety of biomarker and genomic research. These included building relationships and community engagement, learning, research coordination, logistics, consent, samples and biospecimens, biobank structures and protections and policy. The importance of ensuring self-determination, ownership and decision-making power is emphasised in processes to establish and conduct biomarker and genomic research with Indigenous peoples.

Conclusions: Components that contribute to the cultural safety of biomarker and genomic research processes identified in this scoping review were assembled into a theoretical framework to guide research practice. Further evaluation is required by Indigenous peoples and communities to appropriate and adapt this framework for local use to promote the cultural safety of research processes and minimise barriers to Indigenous peoples' participation in biomarker and genomic research.

Keywords: Biomarkers; Culturally safe research; Genomics; Indigenous health.

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Conflict of interest statement

Declarations. Ethics approvals and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests.

Figures

**Fig. 2**
Framework for conducting culturally safe and ethical biomarker and genomic research with Indigenous peoples

See this image and copyright information in PMC

References

1. Cheng Y-Y, Nunn J, Skinner J, Rambaldini B, Boughtwood T, Calma T, et al. A pathway to precision medicine for Aboriginal Australians: a study protocol. Methods and Protocols. 2021;4(2): 42. - PMC - PubMed
1. Padala SP, Newhouse PA. Blood-based biomarkers in Alzheimer’s disease: a mini-review. Metab Brain Dis. 2023;38(1):185–93. - PMC - PubMed
1. O’Shea R, Ma AS, Jamieson RV, Rankin NM. Precision medicine in Australia: now is the time to get it right. Med J Aust. 2022;217(11):559–63. - PMC - PubMed
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1. Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: pragmatic considerations and cultural contexts. Front Public Health. 2020;8: 111. - PMC - PubMed

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[1] Cheng Y-Y, Nunn J, Skinner J, Rambaldini B, Boughtwood T, Calma T, et al. A pathway to precision medicine for Aboriginal Australians: a study protocol. Methods and Protocols. 2021;4(2): 42. - PMC - PubMed

[2] Cheng Y-Y, Nunn J, Skinner J, Rambaldini B, Boughtwood T, Calma T, et al. A pathway to precision medicine for Aboriginal Australians: a study protocol. Methods and Protocols. 2021;4(2): 42. - PMC - PubMed

[3] Padala SP, Newhouse PA. Blood-based biomarkers in Alzheimer’s disease: a mini-review. Metab Brain Dis. 2023;38(1):185–93. - PMC - PubMed

[4] Padala SP, Newhouse PA. Blood-based biomarkers in Alzheimer’s disease: a mini-review. Metab Brain Dis. 2023;38(1):185–93. - PMC - PubMed

[5] O’Shea R, Ma AS, Jamieson RV, Rankin NM. Precision medicine in Australia: now is the time to get it right. Med J Aust. 2022;217(11):559–63. - PMC - PubMed

[6] O’Shea R, Ma AS, Jamieson RV, Rankin NM. Precision medicine in Australia: now is the time to get it right. Med J Aust. 2022;217(11):559–63. - PMC - PubMed

[7] Wolf SM, Annas GJ, Elias S. Patient autonomy and incidental findings in clinical genomics. Science. 2013;340(6136):1049–50. - PMC - PubMed

[8] Wolf SM, Annas GJ, Elias S. Patient autonomy and incidental findings in clinical genomics. Science. 2013;340(6136):1049–50. - PMC - PubMed

[9] Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: pragmatic considerations and cultural contexts. Front Public Health. 2020;8: 111. - PMC - PubMed

[10] Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, et al. Indigenous genomic databases: pragmatic considerations and cultural contexts. Front Public Health. 2020;8: 111. - PMC - PubMed

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Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review

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Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review

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