Ethics of medical research in Aboriginal and Torres Strait Islander populations
Samantha Bobba
+ Author Affiliations
- Author Affiliations
A Department of Ophthalmology, Westmead Hospital, Hawkesbury Road and Darcy Road, Westmead, Sydney, NSW 2145, Australia.
B Prince of Wales Hospital Clinical School, UNSW Australia, High Street, Randwick, Sydney, NSW 2032, Australia.
C University of Sydney, Camperdown, Sydney, NSW 2006, Australia.
D Email: samantha.bobba@gmail.com
Australian Journal of Primary Health 25(5) 402-405 https://doi.org/10.1071/PY18049
Submitted: 19 March 2018 Accepted: 20 November 2018 Published: 8 February 2019
Abstract
Conducting ethical health research in Aboriginal and Torres Strait Islander populations requires an understanding of their unique cultural values and the historical context. The assimilation of Indigenous people with the broader community through colonial policies such as the dispossession of land and forcible removal of children from their families in the Stolen Generation, deprived entire communities of their liberty. Poorly designed research protocols can perpetuate discriminatory values, reinforce negative stereotypes and stigmas and lead to further mistrust between the Indigenous community and healthcare professionals. The manuscript offers a fresh perspective and an up-to-date literature review on the ethical implications of conducting health research in Aboriginal and Torres Strait Islander communities.
References
Bull JR (2010) Research with Aboriginal peoples: authentic relationships as a precursor to ethical research. Journal of Empirical Research on Human Research Ethics; JERHRE 5, 13–22.| Research with Aboriginal peoples: authentic relationships as a precursor to ethical research.Crossref | GoogleScholarGoogle Scholar | 21133783PubMed |
Cochran PA, Marshall CA, Garcia-Downing C, Kendall E, Cook D, McCubbin L, Gover RM (2008) Indigenous ways of knowing: implications for participatory research and community. American Journal of Public Health 98, 22–27.
| Indigenous ways of knowing: implications for participatory research and community.Crossref | GoogleScholarGoogle Scholar | 18048800PubMed |
Couzos S, Lea T, Murray R, Culbong M (2005) ‘We are not just participants—we are in charge’: the NACCHO ear trial and the process for Aboriginal community-controlled health research. Ethnicity & Health 10, 91–111.
| ‘We are not just participants—we are in charge’: the NACCHO ear trial and the process for Aboriginal community-controlled health research.Crossref | GoogleScholarGoogle Scholar |
Crough G (2002) A practical critique of practical reconciliation: what is the reality of Indigenous funding? Australian Universities Review 45, 4
Gillon R (1985) Autonomy and the principle of respect for autonomy. British Medical Journal 290, 1806–1808.
| Autonomy and the principle of respect for autonomy.Crossref | GoogleScholarGoogle Scholar | 3924266PubMed |
Glass KC, Kaufert J (2007) Research ethics review and Aboriginal community values: can the two be reconciled? Journal of Empirical Research on Human Research Ethics; JERHRE 2, 25–40.
| Research ethics review and Aboriginal community values: can the two be reconciled?Crossref | GoogleScholarGoogle Scholar | 19385793PubMed |
Goodyear MD, Krleza-Jeric K, Lemmens T (2007) The declaration of Helsinki. British Medical Journal 335, 624–625.
| The declaration of Helsinki.Crossref | GoogleScholarGoogle Scholar | 17901471PubMed |
Guerin P, Guerin B, Tedmanson D, Clark Y (2011) How can country, spirituality, music and arts contribute to Indigenous mental health and wellbeing? Australasian Psychiatry 19, S38–41.
| How can country, spirituality, music and arts contribute to Indigenous mental health and wellbeing?Crossref | GoogleScholarGoogle Scholar | 21878015PubMed |
Hales M (2006) Native sovereignty by the numbers: the metrics of Yup’ik behavioral. In ‘Metrics: What Counts in Global Health’. (Ed V Adams) pp. 125–146. (Duke University Press: Durham, NC, USA)
Humphrey K (2001) Dirty questions: Indigenous health and ‘Western research’. Australian and New Zealand Journal of Public Health 25, 197–202.
| Dirty questions: Indigenous health and ‘Western research’.Crossref | GoogleScholarGoogle Scholar |
Jamieson LM, Paradies YC, Eades S, Chong A, Maple-Brown LJ, Morris PS, Bailie RS, Cass A, Roberts-Thomson K, Brown A (2012) Ten principles relevant to health research among Indigenous Australian populations. The Medical Journal of Australia 197, 16–18.
| Ten principles relevant to health research among Indigenous Australian populations.Crossref | GoogleScholarGoogle Scholar | 22762218PubMed |
Kingsley J, Phillips R, Townsend M, Henderson-Wilson C (2010) Using a qualitative approach to research to build trust between a non-Aboriginal researcher and Aboriginal participants (Australia). Qualitative Research Journal 10, 2–12.
| Using a qualitative approach to research to build trust between a non-Aboriginal researcher and Aboriginal participants (Australia).Crossref | GoogleScholarGoogle Scholar |
Maddison S (2009) Australia: Indigenous autonomy matters. Development 52, 483–489.
| Australia: Indigenous autonomy matters.Crossref | GoogleScholarGoogle Scholar |
Maddocks I (1992) Ethics in Aboriginal research. A model for minorities or for all? The Medical Journal of Australia 157, 553–555.
Mann JM (1997) Medicine and public health, ethics and human rights. The Hastings Center Report 27, 6–13.
| Medicine and public health, ethics and human rights.Crossref | GoogleScholarGoogle Scholar | 9219018PubMed |
Meadows LM, Lagendyk LE, Thurston WE, Eisener AC (2003) Balancing culture, ethics, and methods in qualitative health research with Aboriginal peoples. International Journal of Qualitative Methods 2, 1–4.
| Balancing culture, ethics, and methods in qualitative health research with Aboriginal peoples.Crossref | GoogleScholarGoogle Scholar |
Moran A (2005) White Australia, settler nationalism and Aboriginal assimilation. The Australian Journal of Politics and History 51, 168–193.
| White Australia, settler nationalism and Aboriginal assimilation.Crossref | GoogleScholarGoogle Scholar |
National Health and Medical Research Council (2017) Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities. (NHMRC: Canberra, ACT, Australia) Available at https://nhmrc.gov.au/about-us/publications/ethical-conduct-research-aboriginal-and-torres-strait-islander-peoples-and-communities [Verified 13 January 2019]
National Health and Medical Research Council (2018) Keeping research on track. (NHMRC: Canberra, ACT, Australia) Available at https://nhmrc.gov.au/about-us/publications/keeping-research-track [Verified 10 October 2018]
Rawls J (2009) ‘A Theory of Justice.’ (Harvard University Press: Boston, MA, USA)
Rigney LI (2003) Indigenous Australian views on knowledge production and Indigenist research. Studies 1, 32–49.
Rosenberg W, Donald A (1995) Evidence based medicine: an approach to clinical problem-solving. BMJ (Clinical Research Ed.) 310, 1122
| Evidence based medicine: an approach to clinical problem-solving.Crossref | GoogleScholarGoogle Scholar | 7742682PubMed |
Russell FM, Carapetis JR, Liddle H, Edwards T, Ruff TA, Devitt J (2005) A pilot study of the quality of informed consent materials for Aboriginal participants in clinical trials. Journal of Medical Ethics 31, 490–494.
| A pilot study of the quality of informed consent materials for Aboriginal participants in clinical trials.Crossref | GoogleScholarGoogle Scholar | 16076978PubMed |
Sherwood J (2010) ‘Do No Harm: Decolonising Aboriginal Health Research.’ (University of New South Wales: Sydney, NSW, Australia)
Smith LT (2013) ‘Decolonising Methodologies: Research and Indigenous Peoples.’ (Zed Books LTD: London, UK)
Vos T, Barker B, Begg S, Stanley L, Lopez AD (2009) Burden of disease and injury in Aboriginal and Torres Strait Islander Peoples: the Indigenous health gap. International Journal of Epidemiology 38, 470–477.
| Burden of disease and injury in Aboriginal and Torres Strait Islander Peoples: the Indigenous health gap.Crossref | GoogleScholarGoogle Scholar | 19047078PubMed |
Weijer C, Emanuel EJ (2000) Protecting communities in biomedical research. Science 289, 1142–1144.
| Protecting communities in biomedical research.Crossref | GoogleScholarGoogle Scholar | 10970227PubMed |
West HR (2004) ‘An Introduction to Mill’s Utilitarian Ethics.’ (Cambridge University Press: Cambridge, UK)
Zion D, Gillam L, Loff B (2000) The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations. Nature Medicine 6, 615–617.
| The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations.Crossref | GoogleScholarGoogle Scholar | 10835665PubMed |
