case study - repatriating remains: a coronial research ... michael meadows.pptcase study...

Case StudyRepatriating Remains:A coronial research proposal

Professor Michael Meadows Forensic and Scientific Services

Human Ethics Committee

Case StudyRepatriating 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.

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ParticipantsAboriginal 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 andancient Indigenous groups throughout Australia

• Members of the research team have long standing relations with Aboriginal andTorres Strait Islander elders and communities

• One of the members identifies as Aboriginal and advises the research team onAboriginal knowledge systems and ethical issues

ConsultationDue to the unknown nature of the samples the research team have advised that it isimpossible to consult with the appropriate Indigenous community. One community orcouncil cannot always speak for another.

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Questions

1. What ethical issues does this proposal raise?

2. What guidelines may be relevant?

3. Who should be consulted?

4. Should it be regarded as a laudable project which is worthwhile for bothscientific knowledge and the potential return of remains to their respectivecustodians?

5. What are the potential harms if any?

6. What additional information, if any, might the ethics committee need to askfor?

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Discussion Points

1. What ethical issues does this proposal raise?

• Equality

• Respect

• Consent

• Reciprocity

• Survival and Protection

• Harms vs. Benefits

• Responsibility

• Spirit and Integrity

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2. What guidelines may be relevant?

• National Statement on Ethical Conduct in Human Research, NHMRC2007 (Updated May 2015)

• Value and Ethics: Guidelines for Ethical Conduct in Aboriginal and TorresStrait Islander Health Research (NHMRC, 2003)

• Keeping Research on Track: A guide for Aboriginal and Torres StraitIslander peoples about health research ethics, NHMRC.

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3. Who should be consulted?

• There is a clear difficulty in knowing in advance who the ‘correct’ groups might be, butdoes this justify no input being sought at all?

• Is there a reference group from a number of Queensland Aboriginal elders who couldbe convened to have input into this project?

• What kind of agreement of consent needs to be sought from Indigenous communitiesfor this project?

• What kind of consent should be sought from those individuals who agree to donatetheir DNA?

• How should committees or groups be sampled? At random? Via mediaannouncements and consent etc.?

• What if there is disagreement between individuals and amongst Indigenous leaders?

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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 contactedout of the blue to receive repatriated remains?

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5. What are the potential harms if any?

• What if the DNA testing shows DNA profiles or markers that are nottypical of Indigenous groups? How will this be managed?

• What if some skeletal remains prove to be of mixed race heritage? Whatwould happen to these remains? How might this affect the community?

• What if the testing is inconclusive as to which Indigenous groups theskeletal remains need to be returned to?

• Could the research produce other unexpected results impacting onIndigenous groups? How would these be managed?

• Is there a broader cultural sensitivity in the way this project reducesAboriginal ‘identity’ to mere genetics?

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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 theplanning 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 resultspublished?

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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 thesame status and authority, therefore are both applicable. They provideguidance in the conception, design and conduct of research that involvesAboriginal and Torres Strait Islander Communities. Values are presentthrough time – past, present and future and cannot be separated.

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1. Spirit and Integrity• Overarching value that binds all others into a coherent whole.

• Continuity between past, current and future generations.

• Behaviour – maintains the coherence of ATSI values and cultures.

• Need to consider researchers motivation and action and intent and process.

2. Reciprocity• Implies inclusion and means recognising partners’ contributions

• Ensures research outcome include equitable benefits of value to ATSI communities or individuals.

• Benefit must contribute to cohesion and survival.

• Respect for the dignity and wellbeing of participants takes precedence over the expected benefits to knowledge.

3. RespectRespectful research relationships:

• acknowledge the right of people to have different values, norms and aspirations (no difference blindness);

• introduce trust and co-operation;

• recognise the contributions of others and the consequence of research;

• are as important as the scientific rigour of the investigation.

4. Equality• Equal value of people/partners = trust.

• Valuing knowledge and wisdom.

• Reflected by a commitment to distributive fairness and justice. Distribution of benefit stands as the fundamental test of equality.

• Affirms the right to be different.

5. Survival and Protection• Importance of values based solidarity – protecting their culture and

identity from erosion by colonisation or marginalisation.

• Respect for social cohesion – the importance of the personal and collective bond and its function.

• Commitment to protect cultural distinctiveness.

6. Responsibility• Recognition of core responsibilities is central to ATSI societies and

cultures.

• 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.

• Ensures the order and survival of individuals, families and whole communities.

• 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.12


Summary of the six values

Final OutcomeThe research team was asked to resubmit an amended application addressing the followingissues:

1. Insufficient evidence to suggest that the benefits justify the potential risks. The research teamalso need to demonstrate how the project will provide equitable benefit to ATSI communities orindividuals, including contribution to cohesion and survival.

2. ATSI peoples familiar with their culture and practices should be consulted in the planning,design and implementation of the project.

3. Written evidence of appropriate consultation and support is required (e.g. letters of support).

4. Broader consultation from a group of elders from many communities is also required.

5. There needs to be a broader plan around dissemination of results, other than a publication in apeer-reviewed journal.

6. The consent process for collecting individual DNA samples needs to be defined in a ParticipantInformation and Consent Form (PICF) outlining the process of consent and for consulting withrelevant ATSI communities.

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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…

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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.

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