Samples and donors' family history and places of birth were gathered from the 1960s up to the 1990s before consent protocols which exist today were in place. So before any research begins, the surviving donors and their relatives will be consulted.

An Indigenous consultative committee, which includes Aboriginal and Torres Strait Island Social Justice Commissioner Mick Gooda, investigated how the collection was made and thought the moral purpose at the time was sound and things were done properly.

Mr Gooda said some links to families lost during the Stolen Generation could be restored. Information and photographs had come from a great spread of people from the top end of Australia. While the scientific value could not be under-estimated, it was essential to get permission first, and give people the right to say no to accessing their records.

National Centre for Indigenous Genomics at the John Curtin School of Medical Research director, Professor Simon Easteal, said the committee felt the real value of the collection would only be realised if this was done in a way which engaged the communities from where the samples were collected."

"We put ourselves in their hands completely and among their comments with their recommendations was this will be a watershed moment in the history of Indigenous research. This collection was done a generation, or even more than a generation ago, so we are not entirely clear of what the people involved knew or were told. In any case, in the context of the way we think about things nowadays, we are aware Aboriginal people believe quite correctly that health initiatives and research will only be beneficial if they are directly involved in it in some way."

Now stored in liquid nitrogen at -196 degrees celsius, the blood samples were collected as part of a huge post-war, world-wide effort. "People were genuinely concerned to put in efforts to make the world a better place and base that on good evidence, that was the spirit of it," Professor Easteal said. "The person who drove most of this was Dr Bob Kirk and this was influential in the consultative committee's deliberations to some extent. Dr Kirk and his wife were involved in Aboriginal land rights activities. He was genuinely concerned about doing good by these people."

Led by Melbourne University's assistant vice-chancellor of Indigenous higher education policy Professor Ian Anderson, the consultative committee sees the collection as culturally and scientifically significant, as well as for health and medical research.

Professor Easteal says Indigenous Australians are virtually absent from studies of human genetic variation, at a time when genome science is at the forefront of medicine, transforming the diagnosis of cancer in ways that can be extended to other diseases, like kidney failure and diabetes.

Professor Easteal says genome sequence variation in people from Europe and parts of Asia is generally known. "In Africa and the Americas a vast amount of money is being spent to fill the knowledge gap there by including people from those continents. Now is the opportunity for Indigenous Australians to also be included in these medical advances and other benefits such as retrieval of lost history, and we are hoping for donations to follow on from funding from the Australian National Data Service and Canberra Medical Society and the National Health and Medical Research Council.

"If a person's genome sequence is to be useful for diagnosis and treatment of disease it needs to be examined together with the sequences of many other people," he said.

Professor Easteal will present a public lecture at 5.30pm on Monday, May 25 in the Finkle Lecture Theatre at the JCSMR.