Genetics can help track the scattering of humans across the globe. But do scientists have the right to study any DNA they want to?
It's not often that I am shocked by someone's research methods.
At a recent conference, I heard Professor Lisa Matisoo-Smith speak about her research using genetics to map how and when humans spread across the Pacific. As a proxy for human movement, she first used the DNA of the kiore, the Pacific rat, which made its way to New Zealand in waka (canoes), before jumping ship on the new land.
As she worked her way across islands in the Pacific tracking kiore, Matisoo-Smith told the locals about what she was doing — until eventually calls of “it’s the rat lady!” would precede her arrival at villages. Eventually, locals asked: “why don’t you study our DNA?”
During her talk, Matisoo-Smith emphasised how important it is that the people you are researching are involved in your studies. She maintained that speaking at town-hall meetings, doing local radio interviews, and explaining her findings to the communities involved are always essential parts of her research. These activities represented many months spent living and working in the communities that she was researching.
It was unsettling to discover that I was surprised by her approach. Hearing about her efforts to include local non-scientists in the decision-making processes made it clear that I had assumed this kind of approach would fall into the above-and-beyond category for research methods.
After a little bit of digging, it was disappointing to learn that my gut feeling hadn’t been too far off the mark. Though Matisoo-Smith's methods are fairly commonplace now, wealthy countries have a checkered history of 'helicopter research' where scientists come in to small communities, take their samples, and leave. As the fly-in, fly-out workers of the science world, these researchers would often have little understanding of the communities they studied and never fed back the results — leading to research that benefited the researcher, but not the participants.
You don’t have to look very far to find the colonial roots of the practise. In imperialistic times, colonisers wielded science as a ‘proof’ of their superiority over other peoples, and treated the gathering of scientific knowledge as their right. They dismissed indigenous knowledge systems, like those the indigenous people of Australia held about the land, making it clear that only the elite were the holders of knowledge.
The legacy of that colonialism still pervades science today, mostly by controlling who gets to do science. For much of the 20th century, ex-colonial powers still performed the majority of research in their old colonies, as their wealth, access to funding and new technologies permitted them the power to do so. But an implicit shadow has always ridden alongside these information-hunters: the assumption that they have the right to study the information these groups possess.
Traditional helicopter research was most often associated with natural biology and anthropology — fields in which local knowledge, or the locals themselves are the focus of research. Anthropology eventually moved away from race as a scientific construct, and a shifting tide in the research community in 1990s prompted calls for more ethical methods of research in indigenous communities. By then, a new era of human study evolved: mapping the human histories using population genetics.
Many anthropologists, like Prof Matisoo-Smith, are interested in using genetic information to help tell the story of human migrations. DNA from European and mixed populations can't tell researchers much about migrations tens of thousands of years ago, because it's hard to disentangle ancient ethnic groups from the layers of more recent trade, cross-pollination, and colonisation. So the best DNA to map out these migrations comes from those who have been geographically isolated for long periods of time with little genetic mixing.
In practice, this means groups like Native Americans, Aboriginal Australians, Torres Strait Islanders and New Zealand Māori.
The Human Genome Diversity Project was one such project in the 90s. However, several indigenous researchers, including Australian law professor Mick Dodson of the Yawuru people, criticised the project's approach on the grounds that DNA was a collective cultural property.
“In the case of most indigenous peoples... there may be a strong sense of common ownership and cultural identity which does not allow an individual to part with something such as DNA, whether for money or other reasons, without group consent.
"Scientists have to negotiate such issues with equality and respect, and accept answers that they may not like.”
The right to study indigenous DNA has become tangled in a more complex understanding about consent, ethics and the individual's right to their own genetic samples.
After World War II, a set of guidelines called the Nuremburg Code were drawn up to ensure nefarious ‘medical’ experiments like those executed by the Nazis never occurred in the name of science again. The code outlines that any research using human subjects must gain informed, voluntary consent for any experiment or procedure, and they must do so after gaining a clear understanding of all facts related to the activity in question.
Consent was already a cornerstone in medical practice, but this was one of the first instances of consent guidelines relating to research. Sadly, the code was largely ignored for the following two decades. Now, most countries now have their own protocols, but these don’t extend internationally, leaving communities without strong protocols at risk.
Genetic studies about susceptibility to disease — like the link between African Americans and sickle-cell anaemia, and the much-disputed Māori ‘warrior gene’ — implicate members of those groups even if they did not participate in or give consent for genetic research. This violates the concept of common ownership over such data.
Misunderstandings about what is being consented to can also breed mistrust between researchers and study participants. Take the famous example of a court case in the US, where the Havasupai tribe sued Arizona State University for misuse of blood samples collected in the late 1980s. In this case, the tribe had approached a researcher at the university to learn why the rate of diabetes in their community was increasing, and whether there was a genetic link.
According to the Havasupai, they only consented to research about diabetes, but other researchers published papers using these samples about inbreeding, alcoholism, and the origin and migration of the tribe from Asia — which contradicted the Havasupai’s own cultural narratives. During the court case, which was settled in 2010, the judge ruled that the researchers had failed to establish informed consent.
The key word there is informed. According to the Hart Report produced on the case, several of the researchers undertaking the research projects not related to diabetes asserted their right to study banked DNA because they were producing something that would be of medical value. But the Havasupai didn’t know that their samples would be used in other studies, and had therefore not given informed consent. Many suggest that the researchers should have gone back to the community to obtain new informed consent for the additional research.
As Roger Chennels, a human rights lawyer who studied indigenous genetic research, puts it in his blog about his research: “Science, in the hands of the dominant culture, claims to be neutral but can be used by researchers in ways that are not always acceptable to indigenous peoples. In the Havasupai case, the scientists claimed that their pursuit of knowledge was for the public good, but the process proved to be harmful for the tribe.”
While some dispute the validity of the chain of events outlined in court, the media and the report by a private investigator on the incident commissioned by the university, it remains one of the most famous cases in bioethics.
But, it’s not all bad. Slowly things are getting better as communities and researchers have learned from blunders of the past.
Now, in the US and Canada, some Native American tribes have their own biobanks of DNA that researchers can apply to use, like the Alaskan Area Specimen Bank, or systems where DNA is considered on loan — where the researcher is considered the temporary steward of samples they receive for research, leaving the individual or community retaining ownership.
Emma Kowal, Professor of Anthropology at Deakin University and Deputy Director of Australia’s National Centre for Indigenous Genomics, notes that the way these issues are handled varies depending on the tribes’ level of influence.
“In the US, tribes are much more powerful individually. They have sovereignty and individual tribes often have their own ethics review committees... In Australia we’ve got much more of a national approach.”
Since 1991, Australia has had guidelines for researching in Australian Aboriginal communities released by the National Health and Medical Research Council (NHMRC), which is the main health funding body in the country. In order to get any funding for health research in indigenous Australian and Torres Strait Islander communities, researchers have to show how their studies will be done in an ethical, culturally safe and appropriate manner, gaining consent from the communities they wish to work in before applying to the NHMRC.
“So researchers can’t pick and choose and find an Aboriginal community that is less aware of their rights,” said Prof Kowal.
These guidelines have greatly improved the rights of those involved in research done by scientists in Australia according to Prof Kowal, which is a great improvement on the dodgy experiments that were done right up until the 1970s. But legally, international researchers don’t have to follow Australian ethical guidelines.
But this is becoming less of an issue, “because there’s more Australian researchers using genetics and genomics these days, so there’s less activity from international researchers.” Most projects now go through the NHMRC ethics process, and big international projects tend to seek in-country approval.
There are also lingering questions about samples from Australia that are held overseas, which Prof Kowal says are used largely without regulation.
“Most ethics committees outside Australia would just say, well, they’ve already been collected with consent to be used for other purposes, but there’s almost no way to verify that.”
Encouragingly, we’ve now dealt with some local concerns over samples collected before consent was commonplace. The Australian National University held around 7,000 Aboriginal Australian blood samples that were collected from northern Australia in the 1960s and 70s. Uneasy about the continued use of these samples, the university stopped using them in the 90s before eventually starting a consultation process with a committee made up of eminent Aboriginal Australians.
Prof Kowal, who was involved in the process, said the committee recommended the samples be governed by indigenous people who would look after them and make sure they would be used in studies which would help their people.
From this process sprouted the National Centre for Indigenous Genomics, whose board is mostly made up of indigenous elders who control what research is done with the samples they hold. The centre now holds the original blood samples while it searches for consent from descendants, as well as new saliva samples collected from people who wanted to donate them.
It seems like much of the world has made progress too, but still, in places with less science resourcing, the opportunity for exploitation remains. Just last month, African scientists called for more control of their continent’s genomic data with the release of guidelines outlining the ethical handling of samples. They are also trying to ensure that the studies involve local scientists and would be of benefit to citizens.
I asked Prof Kowal if fly-in, fly-out scientists are a thing of the past.
“I think we have moved on from helicopter research, but we’ve got so much more to learn.”
Edited by Deborah Kane