At NCIG’s launch in 2013, the inaugural Chair, Mr Mick Gooda said that NCIG was bringing together the world’s oldest living culture with its newest science. That vision came to fruition in 2019 when a deeply traditional community found a way forward that allowed their samples to be, simultaneously, agents that nourish the spiritual and cultural strength of families and community, and that support rigorous impartial scientific methodology.
Galiwin’ku (also known as Elcho Island) is a Yolngu community in East Arnhem Land, 550 km east of Darwin.
Approximately 1,200 of the 7,000 samples held in the NCIG Collection come from Galiwin’ku. Collected in 1968 as part of the health response to an outbreak of typhoid, they are the largest set of samples in the collection from a single community, and have the most detailed information retained about the study participants.
In 2018, NCIG sought agreement from the people of Galiwin’ku to open a consultation about the future of the samples. Working with Yalu Marnggithinyaraw Indigenous Corporation (Yalu), a representative community body, a joint plan for the future management and use of the samples was developed.
Samples of those still living
Most people whose samples are in the Collection chose to provide consent for the use of their samples in NCIG’s genomic research. NCIG is sequencing the DNA from the samples and disposing of the residual material. The DNA information will be added to the NCIG genome resource and will contribute to Indigenous health and medical research.
Samples of those who have passed away
Deciding what to do with the samples of people who are deceased was foremost a cultural matter. People regard the material in the samples as the embodiment of family members. The culturally right process is for the remains of those who pass away to be buried near their home for their families to watch over. The samples held at ANU were in one sense dislocated from home, but a countervailing view emerged that ANU had become their home: the samples had rested in Canberra for 50 years.
It was a difficult matter to resolve on its own terms, and in the end external factors played their role. For the Ngambri-Ngunnawal Traditional Owners on whose land the ANU campus is situated, it was not culturally right to have the samples buried in Canberra. Repatriation was the natural and mutual conclusion.
Culture and tradition are respected, but the people of Galiwin’ku are also participants in modern life. In considering the blood samples in the NCIG Collection, they were ingenious in their navigation between the traditional and the contemporary. They proposed to both sequence and repatriate the samples of those who had passed away. They embraced the vision that those samples can contribute to Indigenous medical research and discovery for years into the future, and still be returned to Country, reconciling the physical and spiritual dislocation.
Once this simple, quite perfect solution emerged, NCIG undertook the laboratory work. A small amount of each sample was consumed by the DNA extraction process in the laboratory. The remaining material was dried. The dried material was combined with other material from people from the same clan (family). The material from each family group was placed in timber boxes hand-made by artists at the ANU School of Art.
Each clan (family) belongs to one of two moieties: Yirritja and Dhuwa. The material was farewelled by the Ngambri-Ngunnawal and escorted from Canberra to Galiwin’ku by Yolgnu Yirritja and Dhuwa representatives. Yalu established a formal memorial site in the town centre, marked by two burial poles made in the traditional style, decorated by an artist from each of the two moieties.
A senior delegation representing the ANU was hosted in Galiwin’ku as the manggu samples were welcomed home by their community. Ceremonial words, prayer, song and clan dance gave way to a celebratory Bunggal (dance) and a Night Market, all attended by many hundreds of people from the community. The burial location of the samples was left to the private choice of each clan. Most are expected to choose burial sites on clan Country.
Something remarkable has happened
The ANU is honoured by the trust and friendship that has been extended by the people of Galiwin’ku through a long and careful consultation. Many emotions were stirred. Many options were explored. The people of Galiwin’ku expressed surprise and shock, and sometimes distress and anger, when they first learned of the existence of the samples in Canberra. At first, there was no easy answer about what should happen to the samples.
Something remarkable has happened here. Conceptual boundaries have been shifted. Models of conduct for human genomic research have been reshaped. Together, the ANU and the community of Galiwin’ku have humanised scientific samples: they are not resources or commodities to be researched upon; they are representations of real people and no harm and much good is done to genomic science by treating them as such.
The final outcome – sequencing and repatriation – is a significant gift from each to the other.
It is hard to imagine a more powerful symbol of reconciliation.