Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal,Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making

Abstract

Dynamic Consent (DC) is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people (First Peoples of Australia).

In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining (or redefining) DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation.

Get full access to this article

View all access options for this article.

References

Tran and

Barcham , (Re)Defining Indigenous Intangible Cultural Heritage (Canberra: Australian Institute of Aboriginal and Torres Strait Islander Studies, Research Discussion Paper no. 37, 2018): at 6, available at <https://aiatsis.gov.au/sites/default/files/products/discussion_paper/dp_tranbarcham_final.pdf> (last visited February 25, 2020).

Food and Agriculture Organization of the United Nations, Free Prior and Informed Consent: An Indigenous Peoples' Right and a Good Practice for Local Communities (2016), available at <http://www.fao.org/3/a-i6190e.pdf> (last visited February 25, 2020).

Budin-Ljøsne ,

H. J.

A . Teare ,

Kaye , and

Beck

et al., “Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research,” BMC Medical Ethics 18, no. 4 (2017): 1–10, available at <https://doi.org/10.1186/s12910-016-0162-9> (last visited February 25, 2020).

Turnbull

, “‘Rare Work amongst the Professors’: The Capture of Indigenous Skulls within Phrenological Knowledge in Early Colonial Australia,” in

Creed and

Hoorn , eds., Body Trade: Captivity, Cannibalism and Colonialism in the Pacific (London: Routledge, 2013): 3–23.

L. H.

Stumpe

, “Restitution or Repatriation? The Story of Some New Zealand Maori Human Remains,” Journal of Museum Ethnography no. 17 (2005): 130–140.

Kowal ,

Radin , and

Reardon , “Indigenous Body Parts, Mutating Temporalities, and the Half-Lives of Postcolonial Technoscience,” Social Studies of Science 43, no. 4 (2013): 465–483.

R. K.

Paterson

, “Heading Home: French Law Enables Return of Maori Heads to New Zealand,” International Journal of Cultural Property 17, no. 4 (2010): 643–652.

See id.

Turnbull

, Science, Museums and Collecting the Indigenous Dead in Colonial Australia (Cham, Switzerland: Palgrave Macmillan US, 2017).

10.

Thornton

, “Repatriation as Healing the Wounds of the Trauma of History: Cases of Native Americans in the United States of America,” in

Fforde ,

Hubert , and

Turnbull , eds., The Dead and Their Possessions: Repatriation in Principle, Policy and Practice (London: Routledge, 2002): at 17.

11.

B. J.

Sellevold

, “Skeletal Remains of the Norwegian Saami,” in

Fforde ,

Hubert , and

Turnbull , eds., The Dead and Their Possessions: Repatriation in Principle, Policy and Practice (London: Routledge, 2002): at 59.

12.

M. M.

Mello and

L. E.

Wolf , “The Havasupai Indian Tribe Case — Lessons for Research Involving Stored Biologic Samples,” New England Journal of Medicine 363, no. 3 (2010): 204–207.

13.

National Centre for Indigenous Genomics, The NCIG Collection, available at <http://ncig.anu.edu.au/ncig-collection> (last visited February 25, 2020).

14.

Easteal

, “A Science That Speaks Across Cultures,” Impact 10 (2018): 72–74, doi.org/10.21820/23987073.2018.10.72; National Centre for Indigenous Genomics Statute 2016 (Cth) (Austl.).

15.

National Centre for Indigenous Genomics Website, available at <http://ncig.anu.edu.au/ncig-collection> (last visited February 25, 2020).

16.

See id.

17.

Australian Centre for Ancient DNA, Aboriginal Heritage Project, University of Adelaide Website, available at <https://www.adelaide.edu.au/acad/ahp/> (last visited February 25, 2020).

18.

Tobler ,

Rohrlach ,

Soubrier , and

Bover

et al., “Aboriginal Mitogenomes Reveal 50,000 Years of Regionalism in Australia,” Nature 544, no. 7649 (2017): 180–184, Supplementary Information: 1–14, available at <https://media.nature.com/original/nature-assets/nature/journal/v544/n7649/extref/nature21416-s1.pdf> (last visited February 25, 2020).

19.

A. B.

Popejoy and

S. M.

Fullerton , “Genomics Is Failing on Diversity,” Nature 538, no. 7624 (October 12, 2016): 161–64, available at <https://www.nature.com/news/genomics-is-failing-on-diversity-1.20759> (last visited February 25, 2020).

20.

M. C.

Cornel and

V. L.

Bonham , “Genomics for All in the 21st Century?” Journal of Community Genetics 8, no. 4 (October 1, 2017): 249–251.

21.

“23andMe to Reduce African Americans Health Research Disparities,”

CenterWatch News Online, October 18, 2016, available at <https://www.prnewswire.com/news-releases/23andmenih-work-to-reduce-health-research-disparities-among-african-americans-300344210.html> (last visited March 13, 2020).

22.

L. L.

Cavalli-Sforza

, “The Human Genome Diversity Project: Past, Present and Future,” Nature Reviews Genetics 6, no. 4 (2005): 333–40.

23.

Crigger

, “The ‘Vampire Project,’” The Hastings Center Report 25, no. 1 (1995): 2.

24.

For example, see Australian Centre for Ancient DNA, Aboriginal Heritage Project: Frequently Asked Questions (FAQs), University of Adelaide Website, available at <https://www.adelaide.edu.au/acad/ahp/faqs.html> (last visited February 25, 2020).

25.

See id.; Tobler et al., supra note 18.

26.

N.A.

Garrison ,

Hudson ,

L. L.

Ballantyne , and

Garba ,

et al., “Genomic Research through an Indigenous Lens: Understanding the Expectations,” Annual Review of Genomics and Human Genetics 20, no. 1 (2019): 495-517, available at <https://www.annualreviews.org/doi/abs/10.1146/annurevgenom-083118-015434?journalCode=genom> (last visited March 13, 2020).

27.

See Garrison et al., supra note 26.

28.

Taylor

, “Human Property: Threat or Saviour?” Murdoch University Electronic Journal of Law 9, no. 4 (2002), available at <http://www.murdoch.edu.au/elaw/issues/v9n4/taylor94.html> (last visited February 25, 2020).

29.

Doodeward v. Spence (1908) 6 CLR 406 (Austl.).

30.

See id.; Pecar v. National Australia Trustees Ltd (The Estate of Ivan Urlich deceased) (Unreported, Supreme Court of New South Wales, Bryson J, 27 November 1996) (Austl.); R v. Kelly [1999] QB 621 (UK).

31.

The State v. Truesdale (1972)13 NC App 622.

32.

Case law is not directly on point, focusing mostly on the preservation of whole corpses, bodily parts and gametes (see

Goold

, “Property in Human Biomaterials,” in

I. R.

Freckleton and

K. A.

Peterson , eds., Tensions and Traumas in Health Law (Federation Press, 2017): at 367, 374); samples with donated consent for medical treatment (Moore v. Regents of the University of California, 51 Cal.3d 120 (Cal. 1990)), or samples collected by policy for testing in relation to an offence (R v. Rothery [1976] 63 Cr App R 231, CA (UK)).

33.

See Doodeward v. Spence, supra note 29.

34.

Skene

, “Raising Issues with a Property Law Approach,” in Persons, Parts and Property: How Should We Regulate Human Tissue in the 21st Century (Oxford: Hart, 2014): at 263, 271.

35.

Skene

, “Arguments against People Legally ‘Owning’ Their Own Bodies, Body Parts and Tissue,” Macquarie Law Journal 7, no. 2 (2002): 165–176.

36.

Goold

, “Abandonment and Human Tissue,” in

Goold ,

Greasley ,

Herring , and

Skene , eds., Persons, Parts and Property: How Should We Regulate Human Tissue in the 21st Century? (Oxford: Hart, 2014): at 125, 149.

37.

Kowal

, “Orphan DNA: Indigenous Samples, Ethical Biovalue and Postcolonial Science,” Social Studies of Science 43, no. 4 (2013): at 591.

38.

Arbour and

Cook , “DNA on Loan: Issues to Consider When Carrying out Genetic Research with Aboriginal Families and Communities,” Public Health Genomics 9, no. 3 (2006): 153–60.

39.

Yearworth v North Bristol NHS Trust [2010] QB 1 (UK).

40.

See, for instance

C.F.

Black

, The Land Is the Source of the Law: A Dialogic Encounter with Indigenous Jurisprudence (London: Taylor & Francis Group, 2010).

41.

See The Report of the Working Group on Human Remains, supra note 26: at 152.

42.

Aramoana and

Koea , “An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research,” Journal of Global Oncology 5 (2019): at 5.

43.

G.A. Res 61/295, United Nations Declaration on the Rights of Indigenous Peoples (Sept. 13, 2007).

44.

ISBER Best Practices: Recommendations for Repositories, Fourth Edition (International Society for Biological and Environmental Repositories, 2018).

45.

L. M.

Jamieson ,

Y. C.

Paradies ,

Eades , and

Chong

et al., “Ten Principles Relevant to Health Research among Indigenous Australian Populations,” The Medical Journal of Australia 197, no. 1 (July 2, 2012): 16–18.

46.

Kowal ,

Greenwood , and

R. E.

McWhirter , “All in the Blood,” Journal of Empirical Research on Human Research Ethics 10, no. 4 (October 2015): at 348.

47.

National Centre for Indigenous Genomics Statute 2016 (Cth) (Austl.)

48.

McWhirter ,

Nicol and

Savulescu , “Genomics in Research and Health Care with Aboriginal and Torres Strait Islander Peoples,” Monash Bioethics Review 33, no. 2–3 (2015): 203–209; see Garrison et al., supra note 26.

49.

See Kowal, supra note 37: at 589.

50.

Anderson ,

Griew , and

McAullay , “Ethics Guidelines, Health Research and Indigenous Australians,” New Zealand Bioethics Journal 4, no. 1 (2003): at 21–22.

51.

Kowal ,

Rouhani , and

Anderson , Genetic Research in Australian and Torres Strait Islander Communities: Beginning the Conversation (Lowitja Institute Discussion Paper, July 2011): at 8.

52.

Y. G.

De Souza and

J. S.

Greenspan , “Biobanking Past, Present and Future: Responsibilities and Benefits,” AIDS 27, no. 3 (2013): 303–312.

53.

Strech ,

Bein ,

Brumhard , and

Eisenmenger

et al., “A Template for Broad Consent in Biobank Research. Results and Explanation of an Evidence and Consensus-Based Development Process,” European Journal of Medical Genetics 59, no. 6–7 (2016): 295–309.

54.

Caulfield and

Kaye , “Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas,” Medical Law International 10, no. 2 (2009): 85–100.

55.

World Medical Association, Declaration of Taipei on Ethical Considerations Regarding Health Databases and Biobanks (2016).

56.

Organization for Economic Co-operation and Development [OECD], OECD Guidelines on Human Biobanks and Genetic Research Databases (2009).

57.

Melham ,

L. B.

Moraia ,

Mitchell , and

Morrison

et al., “The Evolution of Withdrawal: Negotiating Research Relationships in Biobanking,” Life Sciences, Society and Policy 10, no. 16 (2014): 1–13, doi.org/10.1186/s40504-014-0016-5.

58.

National Health and Medical Research Council, National Statement on Ethical Conduct in Human Research (2007, updated 2018).

59.

See Kaye et al., supra note 3.

60.

See Budin-Ljøsne et al., supra note 3.

61.

H. J. A.

Teare ,

Hogg ,

Kaye , and

Luqmani

et al., “The RUDY Study: Using Digital Technologies to Enable a Research Partnership,” European Journal of Human Genetics 25, no. 7 (2017): 816–22, doi.org/10.1038/ejhg.2017.57.

62.

Genetic Alliance, Platform for Engaging Everyone Responsibly, Genetic Alliance Website, available at <http://www.geneticalliance.org/programs/biotrust/peer> (last visited February 25, 2020).

63.

Pattaro ,

Gögele ,

Mascalzoni , and

Melotti

et al., “The Cooperative Health Research in South Tyrol (CHRIS) Study: Rationale, Objectives, and Preliminary Results,” Journal of Translational Medicine 13, no. 348 (2015): 1–16, doi.org/10.1186/s12967-015-0704-9.

64.

H. J. A.

Teare ,

Morrison ,

E. A.

Whitley , and

Kaye , “Towards ‘Engagement 2.0’: Insights from a Study of Dynamic Consent with Biobank Participants,” Digital Health 1 (2015): 1-13, doi.org/10.1177/2055207615605644.

65.

Key Principles, Maiam Nayri Wingara Website, available at <https://www.maiamnayriwingara.org/key-principles> (last visited February 25, 2020).

66.

Minari ,

Teare ,

Mitchell ,

Kaye , and

Kato , “The Emerging Need for Family-Centric Initiatives for Obtaining Consent in Personal Genome Research,” Genome Medicine 6, no. 118 (2014): 1-3, doi.org/10.1186/s13073-014-0118-y.

67.

Latulippe ,

Hamel , and

Giroux , “Social Health Inequalities and eHealth: A Literature Review with Qualitative Synthesis of Theoretical and Empirical Studies,” Journal of Medical Internet Research 19, no. 4 (2017): e136, available at <https://www.jmir.org/2017/4/e136> (last visited February 25, 2020).