Over 7,000 blood samples of Indigenous Australians were taken for scientific research between the 1960s and 1990s by the Australian National University. But Indigenous people were concerned about how they would be used, which led the university to place a moratorium on the samples in 1990, and they wound up in storage.
In April, the centre began asking communities if and how they would like over 7,000 DNA samples to be used. Ideas discussed included potential health benefits, reconnecting members of the Stolen Generation and repatriating ancient remains to their place of origin.
Dr Misty Jenkins, on the board of the NCIG and a medical science researcher, describes the centre’s work as “reconciliation in action”, the effort to break down barriers between Indigenous and other Australians caused by colonisation.
“You’re not just treating Indigenous people like subjects, but actually really deeply engage with communities in a deep respectful, culturally safe way,” Dr Jenkins says.
“Not only can we work together with communities and do some good work, but actually set up a long lasting national legacy where there are governance and ethical protocol that can be rolled out as the golden standard across the country.”
Why Indigenous people want gold ethical standards
Indigenous people were concerned about past blood samples taken through the 1960s to 1990s by the Australian National University because they were sceptical about the intentions behind other research such as the Human Genome Diversity Project.
Indigenous rights campaigner Rodney Dillon told NITV many Indigenous Australians "come from a background of not trusting anybody."
"Over the last 200 years, religion has let our people down, science has let our people down and governments have let our people down," he says.
This past research, which began at Stanford University in the US, was side research to the international Human Genome Project, intending to map the human genome for the first time.
The diversity project, dubbed the "vampire project", was conducted to research the diversity of groups or the "human biosphere" around the world.
Professor Kowal, deputy-director of the NCIG, cultural anthropologist and former medical doctor, told NITV some Indigenous people distrust science because it has been a "critical part of how colonisation has occurred".
Europeans used science to justify ideas that Indigenous people were “biologically inferior”, she says.
“Every area of science and medical research, but particularly genetics, is very heavily weighed down with history.”
Azure Hermes, an NCIG Indigenous community engagement coordinator, has been traveling through Lombadina and One Arm Point in the Kimberley, where some of the samples have originated.
“People want to know 'when did they take my blood and who else is on that list,'” she says.
“Then there are questions about, ‘I don’t think I gave my consent, I can’t remember being told anything about my blood being taken’ and ‘people just used to come here all the time and take blood samples’ – and that’s been going on for a really long time.”
‘Let’s talk with you, not to you’
Preliminary research to produce an ethical framework shows people want to control how their DNA samples are used, who can access them and how long they want them stored, according to the NCIG.
“We’re putting the decision-making process back to Aboriginal people, allowing them to determine what happens with their genes and what happens to their blood and their DNA testing,” says Azure Hermes.
She says many researchers expect people to decide on the spot. “We don’t want to do that. We want to make sure that people think about it and do what’s right for them and their family.”
Communities are “generally” responding positively to the centre’s inclusive approach, she adds.
“People are really quite open to talking about it a bit more and really they’re quite fascinated about the science and what it can bring to the communities, so what it can tell them about diseases and medications, and the benefits that this might have for their children.”
Will genetic research uphold basic rights?
Joint study Genetic Research and Aboriginal and Torres Strait Islander Australians discusses some of the major issues around genetic testing that concern Indigenous Australians.
“The way that Indigenous people are demanding they be treated, I think is the way everybody wants to be treated,” says Professor Kowal, one of the authors.
- Should individual and/or community consent be acquired, and how can that consent be assured?
- How can I assure researchers gain my consent if they wish to use my DNA in the future?
- Will Indigenous people be provided with an interpreter when English is not their first language?
- Is consent written or verbal?
- What about individuals who have passed?
- Should consent be waived for the testing of stored genetic material, as part of a research study, as is the case set out in the NHMRC National Statement on Ethical Conduct in Research Involving Humans guidline in the sections on 'Use of Human Tissue Samples' and 'Human Genetic Research'.
Privacy, ownership and confidentiality
- How long will my data be retained and who will access it?
- Will I maintain ownership of my DNA?
- Does the individual, family and/or community own or have access to my DNA?
- How will it be used in the future, such as during Native Title claims?
What Australia’s ethical framework looks like in 2016
Australia does not yet have specific legislation to govern the relatively new and developing scientific field of genetics, such as the US.
Its 2008 Genetic Information Non-Discrimination Act helps protects people from health insurance companies and workplaces that may discriminate against them based on their genetic predisposition.
Associate Professor Ainsley Newson and Dr Jacqueline Savard, researchers on the Genioz Project investigating the Australian public's expectations of personal genomics, based at the University of Sydney, says it’s not clear if Australia needs specific regulations governing genetic tests.
"Instead, we need to look carefully at current protections such as advertising standards, privacy laws and laws relating to medical devices. We should identify any gaps and work out how to close them in such a way as to protect consumers while still allowing innovation," the say.
"We should also be wary of singling out genetic tests when other kinds of at-home disease and wellness tests are also on the horizon.”
Over a decade ago, the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council conducted a two-year inquiry that led to the 2003 Essentially Yours: The Protection of Human Genetic Information in Australia report to advise on how best to govern genetic testing.
It made 144 recommendations for a potential national framework.
1. The establishment of a Human Genetics Commission of Australia.
2. Amending discrimination laws to "prohibit discrimination based on a person's real or perceived genetic status".
3. Ensuring privacy laws account for a person's genetic information.
4. Prohibiting someone from submitting or analysing another person's sample for any type of genetic testing without consent.
Genetic testing and anti-discrimination policies
A spokesperson from the Australian Government’s National Health and Medical Research Council told NITV the government in 2009 implemented two of 144 recommendations relating to anti-discrimination from the report.
The Disability Discrimination Act 1992 was amended to:
1. Specify that the definition of ‘disability’ includes a genetic pre-disposition to a disability (point 1 of section 4).
2. Prohibit employers from requesting and/or requiring information, including genetic information, from a job applicant or employee, except where the information is reasonably required for purposes that do not involve unlawful discrimination (section 30.
Genetic testing and ownership policies
The Australian Patent Office has confirmed it will not grant patents for "gene sequences, DNA, RNA or nucleic acid sequences that replicate the genetic information that exists in any human's or in any other organism's DNA blueprint or genome".
However, Professor Natalie Stoianoff, director of the Intellectual Property Program at the University of Technology, Sydney, says the patent examiners' manual does not rule out the possibility of granting patents for inventions that are products that incorporate such genetic material.
"A patent is only one form of ownership that might be claimed over those samples, and that depends on the circumstances under which those samples were collected, whether prior informed consent was obtained from each of the individuals whose blood/tissue was harvested," she adds.
Professor Stoianoff also says the potential to create immortal cell lines from the tissue samples collected could be patented by the scientists creating the cell lines from the samples and "not the individuals from whom the samples were taken unless there was an agreement to the contrary".
The Mo cell line and the HeLa cell line in the US are examples. CellBank Australia trades in the HeLa cell line.