Last month, the Galiwin’ku community of Elcho Island off the coast of northern Australia celebrated the return of more than 200 vials of blood that were collected from their ancestors half a century ago, before modern research principles on informed consent existed. Unbeknownst to the Galiwin’ku community, the blood vials had been in freezers at the Australian National University in Canberra ever since.
Many Indigenous Australian communities believe that the remains of their people, including blood and hair, must return to their ancestral home, or Country, to be at peace. Having the blood vials returned “meant a lot to us”, says Ross Mandi Wunungmurra, chair of the Yalu Aboriginal Corporation, the community organization that helped negotiate the samples’ return. Mandi is one of several hundred living community members whose own blood was collected after a typhoid outbreak in 1968.
Before the samples of the deceased were repatriated, the relatives gave permission for DNA to be extracted from the blood, while those still alive offered fresh samples. The genetic information will be stored in the biobank of the National Centre for Indigenous Genomics (NCIG), which the Australian National University (ANU) established specifically to manage its historical samples.
The return was part of a groundbreaking attempt by the NCIG to right the research wrongs of the past. It comes against a backdrop of global uncertainty about what institutions should do with such historical samples, which might contain genetic or other information that is valuable to science, but which were gathered before the establishment of modern research principles governing the ethical collection and storage of such samples. When the Galiwin’ku samples were collected, Australia’s government had only recently recognized Indigenous people as citizens, and racist attitudes that denied them the same rights as white Australians were rife.
Scientists say that the NCIG's approach is laudable, and could be adopted by other institutions with similar legacy collections.But some researchers warn that it may be challenging to find a data access policy that satisfies both Indigenous communities and the researchers who want use the data.
Governed by a majority-Indigenous board, the NCIG has a mandate to approach communities whose historical samples are in the ANU’s store and ask whether the samples should be kept for future research, returned to their homeland or destroyed. So far, the team has contacted four out of several dozen communities.
“The basic principle here is we just do what the community wants us to do,” says NCIG director Simon Easteal.
Researchers say the scale of the NCIG’s endeavour is impressive. Visiting communities, many of which are remote, to ask them what to do about historical samples is resource-intensive and beyond the budget of many institutions, which is probably why so many just leave such samples in their freezers, says Easteal.
Sometimes researchers will ask communities for permission to collect specimens for an individual research project, but that doesn’t resolve the problem of what to do with the specimens once that project is finished, he adds.
Negotiations between the Galiwin’ku community and the NCIG took two years, and involved people from both groups travelling between Canberra and Elcho Island many times, says Azure Hermes, a Gimuy Walubara Yidinji woman from far north Queensland who runs community engagement for the centre.
The centre will attempt to follow the wishes of every Indigenous person whose samples are in its collection, which includes specimens and records from 7,000 Indigenous people. If the person from whom the sample was collected has died, the centre will consult their relatives.
Of the roughly 2,000 people from 4 communities whom the NCIG has so far contacted, about 90% have given permission for their DNA or the DNA of their deceased relatives to be extracted and the data added to the NCIG biobank, says Hermes.
“Australia is definitely leading the way with legacy samples or orphan samples, and figuring out how to deal with them,” says Ripan Malhi, an anthropologist at the University of Illinois at Urbana–Champaign, who has worked with Native American communities in the United States.
The NCIG is giving the communities control over their genomic data, as well as their samples.
Data in the centre’s biobank will eventually be available for other researchers, but participants are able to withdraw consent for their DNA to be used in specific projects — or the biobank as a whole — at any time using an online portal, an approach known as dynamic consent. Annual visits to communities provide further opportunities for communities to make decisions about how their data are used and learn about research outcomes, says Hermes.
Dealing with the genomic data appropriately is just as important as handling the samples themselves sensitively, says Māui Hudson, a Maori man who is a research ethicist at the University of Waikato in New Zealand.
But he says that the dynamic-consent model is at odds with the move towards open data in research. Communities “need to be involved in the process of decisions about what appropriate uses look like, and that’s not possible in a truly open-data environment”, he says.
Emma Kowal, a medical anthropologist at Deakin University in Melbourne, Australia, who helped establish the NCIG and was its deputy director until 2017, acknowledges that there will be challenges when the centre opens the biobank to external research. Researchers often need access to information quickly, and might be wary of including in their project data that could be retracted by participants before they’ve finished.
A legacy of bad blood
What to do with legacy samples is an under-discussed issue globally in biomedical research, says Joseph Yracheta, an biomedical researcher at Missouri Breaks Industries Research, a health company in Eagle Butte, South Dakota, that works with and employs people from the Federal Indian Reservations of the region.
Lots of institutes around the world hold such specimens, but most universities and funding agencies don’t have policies that specify what researchers should do with them, say researchers.
“There’s a huge amount of Indigenous blood and samples and data that’s out there sitting in biobanks and repositories,” says Hudson.