ANU established NCIG in 2013 on the recommendation of an external committee of Indigenous Australians, chaired by Prof Ian Anderson. NCIG is governed by an Indigenous-majority Governance Board and receives advice from a Research Advisory Committee and a Collection Access Committee. In 2014, NCIG commenced a process of consultation with Indigenous communities, families and individuals represented in the collection.
The Australian National University holds a substantial repository of biological samples collected for research purposes in the second half of the 20th century from approximately 7,000 people in 43 communities across northern and western Australia.
It consists of blood and derived products, and an extensive archive of documents and photographs generated during the collection. The collection was made under the auspices of an ambitious world-wide project aimed at understanding the major environmental zones of earth, and “humans in the biosphere”. The project as a whole did not have a cohesive direction (although many smaller studies arising from the work were important) and this, along with the changing political, social and ethical settings emerging in Australia resulted in the ANU placing a moratorium on research in 1990. The collection was placed into long-term storage.
Bringing the collection into the light
Today, the science of genomics is at the heart of extraordinary new discoveries and technologies that are transforming medical practice. Genomics enables information about a person’s DNA to be used for diagnosis and treatment of disease. It also allows the effects of environmental and lifestyle factors to be monitored. For this to happen a person’s genome must be examined together with the genomes of many other people.
Currently we know a great deal about the genomes of people of European ancestry but much less about the genomes of people from other parts of the world, and almost nothing at all about the genomes of Indigenous Australians.
Without this knowledge, Aboriginal and Torres Strait Islander peoples will be excluded from many of the benefits that flow from human genomics research. Rather than helping to close the health gap, these developments in medical science may actually cause it to open up even further.
This startling truth was recognized by a group of eminent Indigenous Australians who were asked by the ANU to assess the collection and advise the ANU on its future. In 2012, the advisory committee said the ANU Collection had "immense cultural, historical and scientific importance". The committee recommended that the ANU form the biological samples and their associated archive into a Managed Collection, overseen by an Indigenous-majority Governance Board.
Accepting this recommendation, in 2013 the ANU formed the National Centre for Indigenous Genomics.
Guided by the vision of its Indigenous-majority Governance Board, NCIG is creating something very special. NCIG is enabling Indigenous peoples to become involved in genome science on their terms, in accordance with their cultural and social values, and in ways that they decide are important – to bring together the world’s oldest living cultures with its newest science in a true partnership.
Done the ‘right way’, this meeting of cultures and knowledge is transforming all involved, with benefits flowing both ways and new insights and discoveries emerging in surprising ways. Whilst genomics and its wonderful possibilities was the impetus for creating NCIG, and remains at its core, other potential value quickly emerged.
- The NCIG Collection may be useful in finding lost family connections or confirming uncertain family relationships. Reconnection with family in this way may have beneficial effects on the health and well-being of Stolen Generations and other people whose family connections have been lost.
- Many ancestral remains of Indigenous Australians are held in museums, hospitals and other institutions both in Australia and elsewhere, and cannot be appropriately repatriated because information about their provenance is lacking or lost. Indigenous communities may wish to use the NCIG Collection to help identify the location and even the family of origin of ancestral human remains.
- Indigenous communities may wish for the NCIG Collection to be used for research that contributes to a much richer understanding of Australia’s long human past, and which complements traditional knowledge and archeological evidence.
Since 2013, the Board and staff of NCIG have been active across a wide range of projects to ensure the collection remains in good physical condition for the long-term, and to prepare the collection for potential research. Commencing with pilot consultations with a small number of communities in 2014, the ground was laid for long-term community relationships which are now maturing. Community interest and wishes are becoming clear, and agreements are being put in place. Indigenous Australians are expressing their support for NCIG, for its respectful methodology and communication, and its aims.