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Genetic Research and Aboriginal and Torres Strait Islander Australians

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An Erratum to this article was published on 09 July 2014

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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Notes

  1. The authors have an interest in this topic from a variety of positions: as non-Indigenous genetic health researchers working in Indigenous communities (JB, SJ), as an Indigenous researcher engaged in health research projects (GP), and as a non-Indigenous cultural anthropologist of genomics and Indigeneity (EK). Author contributions were as follows: EK led the overall research and writing of the article and drafted the article. GP advised on the major Indigenous genetic research project discussed in the article and contributed to the article. CP conducted the PubMed literature review of past genetic research projects and commented on the article. JB and SJ conducted the major Indigenous genetic research project discussed in the article and commented on the article.

  2. Search conducted using PubMed on February 29, 2012, using the following search terms: Australia* AND Aborigin* AND polymorphism (Limits = Title/abstract); Australia* AND Aborigin* AND genetic (Limits = Title/abstract); Australia* AND Aborigin* AND SNP (Limits = Title/abstract).

  3. For examples of models for Indigenous genetic research and service provision, see Foster, Bernsten, and Carter 1998; Canadian Institutes of Health Research and Institute for Aboriginal Peoples Health 2001; Dukepoo 1998; Glass and Kaufert 2002; Duster 2003.

  4. See Kowal 2012; Kowal and Anderson 2012; Kowal, Rouhani, and Anderson 2011.

  5. The terms “Indigenous Australians” and “Aboriginal and Torres Strait Islander people” are used interchangeably in this paper.

  6. One example of such an arrangement for culturally appropriate procedures for the storage of blood and other samples comes from the New Zealand cancer tissue bank, which since 2004 has offered all donors the option of having their sample disposed of with a Maori blessing or karakia (Morrin et al. 2005).

  7. Note that all the existing Australian literature that comments on Indigenous genetic research concerns population genetics. See Dodson and Williamson 1999; Dodson 2000; van Holst Pellekaan 2000; Rimmer 2007.

  8. Depending on the project, short-term benefits might include education, training, and/or employment for community members or increased access to health care. Note that it is important that benefits cannot be inducements to participate in research. For example, it is not appropriate that basic health care is offered in return for participating in research (NHMRC 2003).

  9. At this time there are only three Indigenous Australians with a Ph.D. in any branch of epidemiology and one Indigenous Australian with a Ph.D. in lab science. None is working in genetic research.

  10. Note that the NHMRC National Statement and the Values and Ethics document are designed to be used together. However, there is still a lack of specific guidance on the conduct of genetic research in Indigenous contexts, as is provided by the New Zealand and Canadian guidelines and in the academic literature cited in this article regarding Indigenous communities in the United States, Canada, New Zealand, and elsewhere.

  11. A critical question here, although one that cannot be answered, is whether the AREC would have insisted on re-consenting individual participants for each new use of the sample even if tiered consent was used by the researchers.

References

  • American Academy of Pediatrics. 2004. Ethical considerations in research with socially identifiable populations. Pediatrics 113(1): 148–151.

    Article  Google Scholar 

  • Anonymous. 1994. Concerns of “Vampire” project. Green Left Weekly, February 2. http://www.greenleft.org.au/node/7328. Accessed August 28, 2011.

  • Arbour, L., and D. Cook. 2006. DNA on loan: Issues to consider when carrying out genetic research with Aboriginal families and communities. Community Genetics 9(3): 153–160.

    Article  PubMed  Google Scholar 

  • Arbour, L., E. Yoshida, and L. Field. 2004. The mystery of primary biliary cirrhosis in British Columbia’s First Nations people. International Journal of Circumpolar Health 63(Supplement 2): 185–188.

    PubMed  Google Scholar 

  • Australian Institute of Health and Welfare, and Australian Bureau of Statistics. 2008. The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples, 2008. Canberra: Australian Bureau of Statistics.

    Google Scholar 

  • Australian Law Reform Commission. 2003. Essentially yours: The protection of human genetic information in Australia—section 36: Kinship and identity. Canberra: Australian Government Publishing Service.

    Google Scholar 

  • Bowekaty, M., and D. Davis. 2003. Cultural issues in genetic research with American Indian and Alaskan Native people. IRB: Ethics and Human Research 25(4): 12–15.

    Article  PubMed  Google Scholar 

  • Bowen, D., and V. Penchaszadeh. 2008. Special issue: Enhancing minority recruitment into genetics research. Public Health Genomics 11(4): 189–190.

    Google Scholar 

  • Brodwin, P. 2002. Genetics, identity and the anthropology of essentialism. Anthropological Quarterly 75(2): 323–330.

    Article  Google Scholar 

  • Burhansstipanov, L., L.T. Bemis, and M. Dignan. 2002. Native American recommendations for genetic research to be culturally respectful. Jurimetrics 42(2): 149–157.

    PubMed  Google Scholar 

  • Burt, T., B. Currie, C. Kilburn, et al. 1996. Machado-Joseph disease in East Arnhem Land, Australia. Chromosome 14q32.1 expanded repeat confirmed in four families. Neurology 46(4): 1118–1122.

    Article  PubMed  CAS  Google Scholar 

  • Canadian Institutes of Health Research, and Institute for Aboriginal Peoples Health. 2001. Community based DNA banking: An exploratory workshop on a tribal controlled DNA bank. Vancouver: University of British Columbia.

    Google Scholar 

  • Canadian Institutes of Health Research (CIHR). 2007. CIHR guidelines for health research involving Aboriginal people. Canadian Institutes of Health Research. http://www.cihr-irsc.gc.ca/e/29134.html.

  • Castellano, M.B. 2004. Ethics of Aboriginal health research. Journal of Aboriginal Health 1(1): 98–114.

    Google Scholar 

  • Caulfield, T., A.L. McGuire, M. Cho, et al. 2008. Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biology 6(3): e73. doi:10.1371/journal.pbio.0060073.

    Article  PubMed  Google Scholar 

  • Cooke, M., F. Mitrou, D. Lawrence, E. Guimond, and D. Beavon. 2007. Indigenous well-being in four countries: An application of the UNDP’S Human Development Index to Indigenous peoples in Australia, Canada, New Zealand, and the United States. BioMed Central International Health and Human Rights 7: 9. doi:10.1186/1472-698X-7-9.

    Article  PubMed  Google Scholar 

  • Council for Responsible Genetics. 2006. Report on race and genetic determinism. http://www.gene-watch.org/programs/determinism/RaceReport.html. Accessed December 11, 2011.

  • Cunningham, H. 1998. Colonial encounters in postcolonial contexts: Patenting indigenous DNA and the Human Genome Diversity Project. Critique of Anthropology 18(2): 205–233.

    Article  Google Scholar 

  • Cunningham, C., and F. Stanley. 2003. Indigenous by definition, experience, or world view. British Medical Journal 327(7412): 403–404.

    Article  PubMed  Google Scholar 

  • Davey-Smith, G. 2007. Capitalising on Mendelian randomization to assess the effects of treatments. Journal of Social Medicine 100(9): 432–435.

    Article  Google Scholar 

  • Dodson, M. 2000. Human genetics: Control of research and sharing of benefits. Australian Aboriginal Studies, no. 1 and 2: 56–64.

  • Dodson, M., and R. Williamson. 1999. Indigenous peoples and the morality of the Human Genome Diversity Project. Journal of Medical Ethics 25(2): 204–208.

    Article  PubMed  CAS  Google Scholar 

  • Dukepoo, F.C. 1998. Genetic services in the new era: Native American perspectives. Community Genetics 1(3): 130–133.

    Article  PubMed  CAS  Google Scholar 

  • Du Plessis, R., A. Scott, H. Phillips, F. Cram, B. Tipene-Matua, and A. Winstanley. 2004. The social, cultural, ethical and spiritual implications of genetic testing. University of Canterbury: Social Science Research Centre.

  • Durie, M.H. 2003. The health of indigenous peoples: Depends on genetics, politics, and socioeconomic factors. British Medical Journal 326(7388): 510–511.

    Article  PubMed  Google Scholar 

  • Duster, T. 2003. Buried alive: The concept of race in science. In Genetic nature/culture: Anthropology and science beyond the two-culture divide, ed. A.H. Goodman, D. Heath, and M.S. Lindee, 258–277. Berkeley: University of California Press.

    Google Scholar 

  • Ebrahim, S., and G. Davey Smith. 2008. Mendelian randomization: Can genetic epidemiology help reduce the failures of observational epidemiology? Human Genetics 123(1): 15–33.

    Article  PubMed  Google Scholar 

  • Elger, B. 2010. Ethical issues of human genetic databases: A challenge to classical health research ethics? Burlington: Ashgate.

    Google Scholar 

  • Foster, M., and R. Sharp. 2000. Genetic research and culturally specific risks: One size does not fit all. Trends in Genetics 16(2): 93–95.

    Article  PubMed  CAS  Google Scholar 

  • Foster, M.W., D. Bernsten, and T.H. Carter. 1998. A model agreement for genetic research in socially identifiable populations. American Journal of Human Genetics 63(3): 696–702.

    Article  PubMed  CAS  Google Scholar 

  • Freimuth, V.S., S.C. Quinn, S.B. Thomas, G. Cole, E. Zook, and T. Duncan. 2001. African Americans’ views on research and the Tuskegee Syphilis study. Social Science and Medicine 52(5): 797–808.

    Article  PubMed  CAS  Google Scholar 

  • Glass, K., and J. Kaufert. 2002. Continuing the dialogue: Genetic research with Aboriginal individuals and communities. Vancouver: National Council for Ethics in Human Research, Canadian Commission for UNESCO and Health Canada.

    Google Scholar 

  • Greely, H.T. 1998. Legal, ethical, and social issues in human genome research. Annual Review of Anthropology 27: 473–502.

    Article  PubMed  CAS  Google Scholar 

  • Hausman, D. 2008. Protecting groups from genetic research. Bioethics 22(3): 157–165.

    Article  PubMed  Google Scholar 

  • Hook, G.R. 2009. “Warrior genes” and the disease of being Maori. MAI Review, no. 2: 1–11.

    Google Scholar 

  • Health Research Council of New Zealand (HRCNZ). 2008. Guidelines for researchers on health research involving Maori. Auckland: Health Research Council of New Zealand.

    Google Scholar 

  • Hudson, M., A. Ahuriri-Driscoll, M. Lea, and R. Lea. 2007. Whakapapa—a foundation for genetic research? Journal of Bioethical Inquiry 4(1): 43–49.

    Article  Google Scholar 

  • Humphery, K. 2001. Dirty questions: Indigenous health and “Western research.” Australian and New Zealand Journal of Public Health 25(3): 197–202.

    Article  PubMed  CAS  Google Scholar 

  • Indigenous Peoples Council on Biocolonialism. 2000. Indigenous peoples, genes and genetics: What indigenous peoples should know about biocolonialism. http://www.ipcb.org/publications/primers/index.html. Accessed August 15, 2010.

  • Juengst, E. 1994. Human genome research and the public interest: progress notes from an American science policy experiment. American Journal of Human Genetics 54(1): 121–128.

    PubMed  CAS  Google Scholar 

  • Khoury, M.J. 2009. The scientific foundation for personal genomics: Recommendations from a National Institute of Health-Centers for Disease Control and Prevention multidisciplinary workshop. Genetics in Medicine 11(8): 559–567.

    Article  PubMed  CAS  Google Scholar 

  • Knoppers, B. 2000. Population genetics and benefit sharing. Community Genetics 3(4): 212–214.

    Article  PubMed  CAS  Google Scholar 

  • Kowal, E. 2012. Genetic research in Indigenous health: Significant progress, substantial challenges. Medical Journal of Australia 197(1): 19–20.

    Article  PubMed  Google Scholar 

  • Kowal, E., and I. Anderson. 2012. Genetic research in Aboriginal and Torres Strait Islander communities: Continuing the conversation. Melbourne: Lowitja Institute.

    Google Scholar 

  • Kowal, E., I. Anderson, and R. Bailie. 2005. Moving beyond good intentions: Indigenous participation in Aboriginal and Torres Strait Islander health research. Australian Journal of Public Health 29(5): 468–470.

    Article  Google Scholar 

  • Kowal, E., L. Rouhani, and I. Anderson. 2011. Genetic research in Aboriginal and Torres Strait Islander communities: Beginning the conversation. Melbourne: Lowitja Institute.

    Google Scholar 

  • Lea, R. 2006. Tracking the evolutionary history of the Warrior gene in the South Pacific. Paper presented at the 11th meeting of the International Congress of Human Genetics, August 6–10, in Brisbane, Australia.

  • Lea, R., and G. Chambers. 2007. Monoamine oxidase, addiction, and the “Warrior” gene hypothesis. The New Zealand Medical Journal 120(1250): 1–6.

    Google Scholar 

  • Lone Dog, L. 1999. Whose genes are they? The Human Genome Diversity Project. Journal of Health and Social Policy 10(4): 51–66.

    Article  PubMed  CAS  Google Scholar 

  • MacIntosh, C. 2005. Indigenous self-determination and research on human genetic material: A consideration of the relevance of debates on patents and informed consent, and the political demands on researchers. Health Law Journal 13: 213–252.

    PubMed  Google Scholar 

  • Marks, J. 2003. Human Genome Diversity Project: Impact on indigenous communities. In Encyclopedia of the human genome, vol. 3, ed. D.N. Cooper, 335–338. London: Macmillan.

    Google Scholar 

  • Marks, J. 2005. Your body, my property: The problem of colonial genetics in a post-colonial world. In Embedding ethics, ed. L. Meskel and P. Pels, 29–45. Oxford: Berg.

    Google Scholar 

  • Mead, A. 1996. Genealogy, sacredness, and the commodities market. Cultural Survival Quarterly 20(2): 46–52.

    Google Scholar 

  • Mello, M.M., and L.E. Wolf. 2010. The Havasupai Indian tribe case: lessons for research involving stored biological samples. The New England Journal of Medicine 36(3): 204–207.

    Article  Google Scholar 

  • Metcalfe, S.A., A.H. Bittles, P. O’Leary, and J. Emery. 2009. Australia: Public health genomics. Public Health Genomics 12(2): 121–128.

    Article  PubMed  CAS  Google Scholar 

  • Morrin, H., S. Gunningham, M. Currie, G. Dachs, F. Fox, and B. Robinson. 2005. The Christchurch Tissue Bank to support cancer research. Journal of the New Zealand Medical Association 118(1225): 1–12.

    Google Scholar 

  • National Health and Medical Research Council (NHMRC). No date. Criteria for health and medical research of Indigenous Australians. Canberra: National Health and Medical Research Council.

  • National Health and Medical Research Council (NHMRC). 2003. Values and ethics: Guidelines for conduct of Aboriginal and Torres Strait Islander health research. Canberra: National Health and Medical Research Council.

    Google Scholar 

  • National Health and Medical Research Council (NHMRC). 2006. Keeping research on track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics. Canberra: National Health and Medical Research Council.

    Google Scholar 

  • National Health and Medical Research Council (NHMRC). 2010. Road map II: A strategic framework for improving the health of Aboriginal and Torres Strait Islander people through research. Canberra: National Health and Medical Research Council.

    Google Scholar 

  • Paradies, Y., M.J. Montoya, and S.M. Fullerton. 2007. Racialized genetics and the study of complex diseases: The thrifty genotype revisited. Perspectives in Biology and Medicine 50(2): 203–227.

    Article  PubMed  CAS  Google Scholar 

  • Pearce, N., S. Foliaki, A. Sporle, and C. Cunningham. 2004. Genetics, race, ethnicity, and health. British Medical Journal 328(7477): 1070–1072.

    Article  PubMed  Google Scholar 

  • Port, R.V., J. Arnold, D. Kerr, N. Glavish, and I. Winship. 2008. Cultural enhancement of a clinical service to meet the needs of indigenous people: Genetic service development in response to issues for New Zealand Maori. Clinical Genetics 73(2): 132–138.

    Article  PubMed  CAS  Google Scholar 

  • Ramos, E., and C. Rotimi. 2009. The A’s, G’s, C’s, and T’s of health disparities. BioMed Central Medical Genomics 2: 29. doi:10.1186/1755-8794-2-29.

    PubMed  Google Scholar 

  • Reardon, J. 2005. Race to the finish: Identity and governance in an age of genomics. Princeton: Princeton University Press.

    Google Scholar 

  • Rimmer, M. 2007. The genographic project: Traditional knowledge and population genetics. Australian Indigenous Law Review 11(2): 33–54.

    Google Scholar 

  • Rose, N. 2001. The politics of life itself. Theory, Culture and Society 18(6): 1–30.

    Article  Google Scholar 

  • Sanner, J., and L. Frazier. 2007. Factors that influence characteristics of genetic biobanks. Journal of Nursing Scholarship 39(1): 25–29.

    Article  PubMed  Google Scholar 

  • Scott, A., H. Phillips, A. Moore, and R. Du Plessis. 2005. Ethics in practice: Conversations about biobanks. Critical Public Health 15(4): 359–368.

    Article  Google Scholar 

  • Sharp, R., and M. Foster. 2002. Community involvement in the ethical review of genetic research: Lessons from American Indian and Alaska Native populations. Environmental Health Perspectives 110(2): 145–148.

    Article  PubMed  Google Scholar 

  • Smith, L.T. 1999. Decolonizing methodologies, research and indigenous peoples. London and New York: Zed Books Ltd.

    Google Scholar 

  • Stoke, J. 2006. Family tragedy behind gene work. New Zealand Herald, August 12. http://www.nzherald.co.nz/technology/news/article.cfm?c_id=5&objectid=10395865.

  • Sutton, P. 2005. Social scientists and Native Title cases in Australia. Public Archaeology 4(2 and 3): 121–126.

    Article  Google Scholar 

  • TallBear, K. 2001. The tribal specific approach to genetic research and technology. Wellington: University of Victoria.

    Google Scholar 

  • TallBear, K. 2003. DNA, blood, and racializing the tribe. Wicazo SA Review 18(1): 81–107.

    Article  Google Scholar 

  • Tano, M. 2006. Interrelationships among native peoples, genetic research, and the landscape: Need for further research into ethical, legal, and social issues (DNA fingerprinting and civil liberties). Journal of Law, Medicine, and Ethics 34(2): 301–309.

    Article  PubMed  Google Scholar 

  • UNESCO. 2006. Permanent forum on indigenous issues report on the fifth session (15–26 May 2006). New York: United Nations.

    Google Scholar 

  • van Holst Pellekaan, S. 2000. Genetic research: What does this mean for Indigenous Australian communities? Australian Aboriginal Studies, no. 1 and 2: 65–75.

  • Wade, N. 2005. Genetic find stirs debate on race-based medicine. The New York Times, November 11. http://www.nytimes.com/2005/11/11/health/11heart.html.

  • Wiwchar, D. 2004. Nuu-Chah-Nulth blood returns to west coast. Ha-Shilth-Sa Newsletter 31(25): 1–4.

    Google Scholar 

  • Wolf, L.E. 2010. Advancing research on stored biological materials: Reconciling law, ethics and practice. Minnesota Journal of Law, Science and Technology 11(1): 99–156.

    Google Scholar 

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Acknowledgements

Lobna Rouhani assisted with literature reviews for this article. Research on Aboriginal genetics carried out in the Blackwell laboratory is funded by the NHMRC and approved by WAAHIEC.

Details of Funding Support

EK is supported by an Australian National Health and Medical Research Council Training Fellowship for Aboriginal and Torres Strait Islander Health Research (#454813). GP is supported by an NHMRC Centre for Clinical Excellence. CP is funded by an ARC Future Fellowship (#FT0992120) and an NHRMC Project Grant (#634403). SJ is supported by NHMRC Project Grants (#APP1003817 and #634301) and a Brightspark Foundation Fellowship. JB is supported by an NHMRC Project Grant (#634301), a National Institutes of Health RO1 grant (AI076233-01), and the NIH Tropical Medicine Research Centre (#1P50AI074321-01).

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Authors and Affiliations

  1. School of Social and Political Sciences, University of Melbourne, Melbourne, Victoria, 3010, Australia

    Emma Kowal

  2. Telethon Institute for Child Health Research, P.O. Box 855, West Perth, Western Australia, 6872, Australia

    Glenn Pearson, Sarra E. Jamieson & Jenefer M. Blackwell

  3. University of Western Australia, 35 Stirling Highway Crawley, Perth, Western Australia, 6009, Australia

    Chris S. Peacock

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  1. Emma Kowal
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  2. Glenn Pearson
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  3. Chris S. Peacock
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Correspondence to Emma Kowal.

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An erratum to this article is available at http://dx.doi.org/10.1007/s11673-014-9553-0.

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Kowal, E., Pearson, G., Peacock, C.S. et al. Genetic Research and Aboriginal and Torres Strait Islander Australians. Bioethical Inquiry 9, 419–432 (2012). https://doi.org/10.1007/s11673-012-9391-x

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