Case Study Repatriating Remains: A coronial research proposal Professor Michael Meadows Forensic and Scientific Services Human Ethics Committee

Case Study Repatriating Remains: A coronial research proposal Experienced anthropologist Professor Bond of South Coast University is proposing to collaborate with molecular biologists to extract and sequence DNA from human skeletal remains of uncertain antiquity. These remains are currently housed in a Queensland government facility. The provenance of these remains is not completely clear but appears to be from a location in Western Queensland associated with a particular contemporary Indigenous group. The research team at South Coast University propose to compare the DNA extracted from the skeletal remains with a range of DNA samples collected from modern Indigenous groups living in or near the location of supposed geographic origin of skeletal remains. The aim is to allow the skeletal remains to be repatriated to the appropriate contemporary Indigenous group.

Case Study Repatriating Remains: A coronial research proposal Participants Aboriginal and/or Torres Strait Islander peoples Research team Extensive experience in the analysis of ancient DNA from skeletal remains Involved in a number of projects that study genetic diversity in contemporary and ancient Indigenous groups throughout Australia Members of the research team have long standing relations with Aboriginal and Torres Strait Islander elders and communities One of the members identifies as Aboriginal and advises the research team on Aboriginal knowledge systems and ethical issues Consultation Due to the unknown nature of the samples the research team have advised that it is impossible to consult with the appropriate Indigenous community. One community or council cannot always speak for another.

Case Study Repatriating Remains: A coronial research proposal Questions What ethical issues does this proposal raise? What guidelines may be relevant? Who should be consulted? Should it be regarded as a laudable project which is worthwhile for both scientific knowledge and the potential return of remains to their respective custodians? What are the potential harms if any? What additional information, if any, might the ethics committee need to ask for? Note: For the purposes of this discussion, coronial issues have been omitted. The focus should be on the social, cultural and ethical issues of this proposal.

Case Study Repatriating Remains: A coronial research proposal Discussion Points 1. What ethical issues does this proposal raise? Equality Respect Consent Reciprocity Survival and Protection Harms vs. Benefits Responsibility Spirit and Integrity (not to be shared with the audience until after the discussion) (Refer to slide on six ATSI values – slide 11)

Case Study Repatriating Remains: A coronial research proposal 2. What guidelines may be relevant? National Statement on Ethical Conduct in Human Research, NHMRC 2007 (Updated May 2015) Value and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (NHMRC, 2003) Keeping Research on Track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics, NHMRC. (not to be shared with the audience until after the discussion)

Case Study Repatriating Remains: A coronial research proposal 3. Who should be consulted? There is a clear difficulty in knowing in advance who the ‘correct’ groups might be, but does this justify no input being sought at all? Is there a reference group from a number of Queensland Aboriginal elders who could be convened to have input into this project? What kind of agreement of consent needs to be sought from Indigenous communities for this project? What kind of consent should be sought from those individuals who agree to donate their DNA? How should committees or groups be sampled? At random? Via media announcements and consent etc.? What if there is disagreement between individuals and amongst Indigenous leaders? (not to be shared with the audience until after the discussion)

Case Study Repatriating Remains: A coronial research proposal 4. Should it be regarded as a laudable project which is worthwhile for both scientific knowledge and the potential return of remains to their respective custodians?   What is the impetus for this project – research or repatriation? Is there a risk that the results will create harm to communities contacted out of the blue to receive repatriated remains? (not to be shared with the audience until after the discussion)

Case Study Repatriating Remains: A coronial research proposal 5. What are the potential harms if any? What if the DNA testing shows DNA profiles or markers that are not typical of Indigenous groups? How will this be managed? What if some skeletal remains prove to be of mixed race heritage? What would happen to these remains? How might this affect the community? What if the testing is inconclusive as to which Indigenous groups the skeletal remains need to be returned to? Could the research produce other unexpected results impacting on Indigenous groups? How would these be managed? Is there a broader cultural sensitivity in the way this project reduces Aboriginal ‘identity’ to mere genetics? (not to be shared with the audience until after the discussion)

Case Study Repatriating Remains: A coronial research proposal 6. What additional information, if any, might the ethics committee need to ask for? What efforts have been made to address the values and ethics in the planning or design of the project? Who will make the repatriation arrangements? Who will provide genetic counselling? What if ultimately Indigenous groups refuse to have the results published? (not to be shared with the audience until after the discussion)

Case Study Repatriating Remains: A coronial research proposal Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (NHMRC, 2003) These guidelines are in addition to the National Statement and have the same status and authority, therefore are both applicable. They provide guidance in the conception, design and conduct of research that involves Aboriginal and Torres Strait Islander Communities. Values are present through time – past, present and future and cannot be separated.

Case Study Repatriating Remains: A coronial research proposal Summary of the six values 1. Spirit and Integrity 4. Equality Overarching value that binds all others into a coherent whole. Equal value of people/partners = trust. Continuity between past, current and future generations. Valuing knowledge and wisdom. Behaviour – maintains the coherence of ATSI values and cultures. Reflected by a commitment to distributive fairness and justice. Distribution of benefit stands as the fundamental test of equality. Need to consider researchers motivation and action and intent and process. Affirms the right to be different. 2. Reciprocity 5. Survival and Protection Implies inclusion and means recognising partners’ contributions Importance of values based solidarity – protecting their culture and identity from erosion by colonisation or marginalisation. Ensures research outcome include equitable benefits of value to ATSI communities or individuals. Respect for social cohesion – the importance of the personal and collective bond and its function. Benefit must contribute to cohesion and survival. Commitment to protect cultural distinctiveness. Respect for the dignity and wellbeing of participants takes precedence over the expected benefits to knowledge. 6. Responsibility 3. Respect Recognition of core responsibilities is central to ATSI societies and cultures. Respectful research relationships: Broad and includes those to country, kinship bonds, caring for others and the maintenance of harmony and balance within and between the physical and spiritual realms. acknowledge the right of people to have different values, norms and aspirations (no difference blindness); introduce trust and co-operation; Ensures the order and survival of individuals, families and whole communities. recognise the contributions of others and the consequence of research; are as important as the scientific rigour of the investigation. Key responsibility – doing no harm to individuals, communities, the things they value or the ability to comply with one’s responsibilities. Researchers must demonstrate a transparent accountability regime.

Case Study Repatriating Remains: A coronial research proposal Final Outcome The research team was asked to resubmit an amended application addressing the following issues: Insufficient evidence to suggest that the benefits justify the potential risks. The research team also need to demonstrate how the project will provide equitable benefit to ATSI communities or individuals, including contribution to cohesion and survival. ATSI peoples familiar with their culture and practices should be consulted in the planning, design and implementation of the project. Written evidence of appropriate consultation and support is required (e.g. letters of support). Broader consultation from a group of elders from many communities is also required. There needs to be a broader plan around dissemination of results, other than a publication in a peer-reviewed journal. The consent process for collecting individual DNA samples needs to be defined in a Participant Information and Consent Form (PICF) outlining the process of consent and for consulting with relevant ATSI communities. 1. This project could have some benefit, if repatriation is the consensus aim of indigenous people. Researchers however need to demonstrate inclusion of independent Aboriginal community elders to endorse the aims, processes and contribution to managing the dissemination of the results, and more importantly, the appropriate repatriation where applicable 2. Although the research team has apparently developed a good working relationship with a number of Aboriginal communities and elders across Queensland, the NEAF should explicitly detail the efforts that have been made to address the ‘Values and Ethics Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research’ for this project. 3. Consultation with a wider Indigenous reference group is desirable (e.g. the Lowitja Institute, which is Australia’s National Institute for ATSI Health research and incorporates the Cooperative Research Centre for ATSI Studies). 4. Whilst one of the team members is an Aboriginal man, an independent view (from a group of elders from many communities) on the suitability of this project should be sought as this team member is conflicted as someone who may benefit in terms of research funding and career progression from this research. 5. There is an obligation on the researcher to provide feedback to ATSI stakeholders to ensure full “benefits” of the research are realised. Also, there needs to be a commitment to assist their interest in repatriation to decide appropriate kinship groups. The project must identify a partner or organisation which can undertake repatriation using the research results. Repatriation is the primary benefit of this research for the participant group. As the application does not provide any information on the repatriation process Committee members considered that it may be incorrectly viewed as an add on to the researchers main focus of DNA profiling to make the research a more attractive proposition. The process for repatriation, the relevant stakeholders and their agreed roles and obligations must be clearly outlined in the study proposal. Written evidence of such commitments is necessary.

Case Study Repatriating Remains: A coronial research proposal A summary from the literature… A need for clearer guidelines Research must reflect needs and priorities of communities through existing governance structures: elders, local representative committees etc. (beware of diversion from non- genetic causes of health disparities) Biological samples must be handled with respect in accordance with community and/or individual wishes Blood and tissue samples are ‘on loan’ Community involvement at all stages (reciprocity) Clear community and individual consent about future use (timeframes; oral or written?) Opportunities to benefit? Results returned to the community for their own use Finding a balance between interests and preferences of research subjects and maintaining the viability of medical research Establishing a dialogue… 1. This project could have some benefit, if repatriation is the consensus aim of indigenous people. Researchers however need to demonstrate inclusion of independent Aboriginal community elders to endorse the aims, processes and contribution to managing the dissemination of the results, and more importantly, the appropriate repatriation where applicable 2. Although the research team has apparently developed a good working relationship with a number of Aboriginal communities and elders across Queensland, the NEAF should explicitly detail the efforts that have been made to address the ‘Values and Ethics Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research’ for this project. 3. Consultation with a wider Indigenous reference group is desirable (e.g. the Lowitja Institute, which is Australia’s National Institute for ATSI Health research and incorporates the Cooperative Research Centre for ATSI Studies). 4. Whilst one of the team members is an Aboriginal man, an independent view (from a group of elders from many communities) on the suitability of this project should be sought as this team member is conflicted as someone who may benefit in terms of research funding and career progression from this research. 5. There is an obligation on the researcher to provide feedback to ATSI stakeholders to ensure full “benefits” of the research are realised. Also, there needs to be a commitment to assist their interest in repatriation to decide appropriate kinship groups. The project must identify a partner or organisation which can undertake repatriation using the research results. Repatriation is the primary benefit of this research for the participant group. As the application does not provide any information on the repatriation process Committee members considered that it may be incorrectly viewed as an add on to the researchers main focus of DNA profiling to make the research a more attractive proposition. The process for repatriation, the relevant stakeholders and their agreed roles and obligations must be clearly outlined in the study proposal. Written evidence of such commitments is necessary.

Case Study Repatriating Remains: A coronial research proposal References Kowal E. Genetic research in Indigenous health: significant progress, substantial challenges. Med J Aust 2012; 197(1): 19-20. Kowal E, Pearson G, Peacock CS, Jamieson SE, Blackwell JM. Genetic research and Aboriginal and Torres Strait Islander Australians. J Bioethical Inquiry 2013; 9: 419-432.