September 28, 2011

Aboriginal genome analysis and ethics

Ewen Callaway discusses ethical issues surrounding the publication of an Australian Aborigine full genome sequence from a hair sample collected about a hundred years ago by a British scientist.

From the article:
"To be sequencing DNA from the hair of a deceased indigenous person is uncharted ethical territory," says Emma Kowal, a cultural anthropologist at the University of Melbourne.
Sequencing DNA from the hair of a deceased indigenous person is nothing new. Scientists have done it, for example, on Napoleon's hair. But, of course, "indigenous", is a code word for pre-European. Everyone's genome is a composite of bits that have arrived at different times from different places. There is nothing "indigenous" about any of our DNA, unless we believe in fables like that of Erichthonius. What is the use of the concept of "indigeneity"? To make cultural anthropologists feel good about their role as protectors of "indigenous people".

Of course, I believe that anthropologists should not just go ahead and get DNA from the dead. But, as far as I can tell, Haddon did not go around the world with a pair of scissors chasing after people for hair samples. Nor are there, as far as I can tell, any close relatives of the deceased that might object to his full genomic sequence (and by implication half, or a quarter of their sequence) being published. So, where is the ethical problem?

More from the article:
But some scientists are jittery about how others in the Aboriginal community might receive the project, and worry that it could set back efforts to engage Aboriginals in genetic research. "In a sense, every Aboriginal Australian has had something about themselves revealed to the world without their consent," says Hank Greely, who directs the Center for Law and the Biosciences at Stanford University in California.
In other words: let's not do genetic research because it might prevent us from doing genetic research. Of course something has been revealed about Aboriginal Australians by the use of this sample. Something has been revealed about me whenever there are Greek DNA samples published. There have been tons of genetic studies on Jews, Finns, African Americans, etc., should we seek the "consent" of every group one belongs to before doing a study? I'm human, and I object to studies comparing humans with chimpanzees, because it might reveal something about me without my consent...

More:
Aboriginal Australians endured centuries of repression by European colonists, but their wariness of genetic research owes much to the Human Genome Diversity Project (HGDP). This 1990s international collaboration aimed to catalogue the genetic diversity of populations worldwide, but sparked concerns that indigenous peoples were being subjected to neocolonial 'bioprospecting'. "Probably the strongest opposition we ran into anywhere in the world" was in Australia, says Greely, who was an ethical adviser to the project. Plans to include Aboriginal Australian DNA were eventually scrapped, and the furore's impact continues to reverberate, says Kowal. "The damage that the HGDP has done for the prospect of doing genetic research with Aboriginal people has been significant." Researchers who work with Aboriginal Australians are now expected to obtain consent not only from the individuals concerned, but also from local and sometimes state-wide groups representing Aboriginal communities across Australia.
I believe in empirical evidence. There are dozens of human populations represented in the Human Genome Diversity Panel that have been used and re-used by scientists and amateurs like myself alike. Can any of the professional kind souls point to a single bad thing that has happened to any of these populations because of it?

What about the rights of individual Aboriginal Australians? Suppose that you are an Aboriginal Australian who wants to learn about his ancestry and origins, the same with all those Europeans, Africans, Asians, etc. who buy genetic ancestry tests or visit genealogy, archaeology, and history forums. Why should your natural desire to learn about your own past, and the natural desire of anthropologists and geneticists to learn about human history have to go through the bureaucracy of community- and state-level "representatives"?

More:
A Danish bioethical review board did not believe it was necessary to review the project because it viewed the hair as an archaeological specimen and not a biological one, Willerslev says. However, after his team sequenced the genome, an Australian colleague put Willerslev in touch with the Goldfields Land and Sea Council, a body based in Kalgoorlie, Western Australia, that represents the 5,000 or so Aboriginal Australians living in the region where Haddon collected the hair sample. In June, Willerslev flew to the region to describe his project to the organization's board and to seek its approval. He says that if the board had rejected his proposal, he would have ended the project and left the genome unpublished.
I am glad that the "Land and Sea Council" gave Willerslev its consent. But, seriously, who are they to decide whether the hair sample should be used or not?

It could be argued that Haddon's unknown hair donor did not authorize a particular use of his hair sample. But, it is ludicrous to expect people from the past to anticipate all the potential uses that their tissues may have in the future. Nor is there any evidence that the anonymous donor authorized some council representing 5,000 future Aboriginal Australians, including a few of his distant relatives to prevent it from being used.

More:
Despite Willerslev's efforts, "I would suggest there would be a certain amount of unrest in the indigenous communities", says van Holst Pellekaan. Greely agrees that Willerslev's team should have reached out to other Aboriginal groups.
So, it is not only sufficient for the future local council to get in on the consent action, but it is proposed that the one from the next town, or halfway around Australia should be involved too.

Scientists should not victimize DNA donors or their communities, but neither should they acquiesce to a never-ending political game of "consent", whereby they must appease every busybody elected or unelected "representative" before doing their work.

Mark Stoneking has it about right:
"I think they did everything anyone could reasonably expect them to," counters Mark Stoneking, a molecular anthropologist at the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany. He published a complementary analysis of Aboriginal genomes last week, using DNA samples obtained by other scientists with the consent of the Aboriginal Australian individuals involved.
But, I would argue that they did more than anyone could reasonably expect them to. Since there is no evidence that the sample was collected illegally and unethically, and since the Danish review board approved the study, there would have been no reason not to publish the study if the "Goldfields Land and Sea Council" had objected. I would be pissed if I was a member of the research group that did all this work without intending or actually causing harm to anybody, and I was told not to publish because some council said so.

Moreover, the issue is one of basic scientific integrity: scientists should seek to understand the world as it is, including patterns of human diversity and history.

Suppose that Willerslev had reached a different conclusion, e.g., that Australian Aborigines arrived 5,000 years ago, and this was rejected by local interest groups because it clashed with their oral histories. Are scientists only to publish results that are acceptable to studied populations' traditions and mythologies, and be prevented from publishing those that falsify them?

More:
Having a set of widely accepted guidelines for studying such samples would help to guide researchers, journals and funding agencies, says Stoneking. "Hopefully some sort of standards can be developed so everyone feels comfortable going ahead with this research," he says.
I agree. A set of guidelines would have twofold utility:
  1. To prevent researchers from engaging in unethical behavior. We don't want scientists to get people's DNA and then use it against them in a demeaning manner, or profiting from its potential commercial uses.
  2. To prevent professional complainers from stopping scientific research when it might or does clash with local lore or ill-defined interests

11 comments:

Onur said...

but sparked concerns that indigenous peoples were being subjected to neocolonial 'bioprospecting'

In other words, concerns about threats to the credibility of their fairytales, which are called in polite speech religious beliefs, mythology, legends or local lore.

Milford E Smiff said...

These days, cultural anthropologists are on the same level as Ark hunters and Ancient Alien theorists. Why does anyone take them seriously?

George said...

Is this sample the first we have of an attested full-blooded Aboriginal? If so, this is momentous! Shame on the know-nothings who parade as More Sensitive Than Thou.

Charles Nydorf said...

Unfortunately this anti-intellectual agenda is not restricted to some cultural anthropologists. The other two critics cited are van Holst Pelekaan, a geneticist and Greeley, a bioethicist.

Xaver said...

In the case of aboriginal Australians a lot of folks deem it necessary to protect them from_???.
For a long time Aborigines where treated as second class in Australia, so anything that could mark them as different or outstanding is rejected by politically correct scientists. Their rejection of genetical studies is hard to understand in the face of studies being made of about any community in the world, starting from San to Siberian to almost all South American tribes.

Amanda S said...

Behind these concerns is a recognition of the genuine distrust that many Aboriginal people have because of the methods and uses to which scientific research into their communities have been used in the past. Over the past couple of decades many Aboriginal groups have put a great deal of effort and had some success in repatriating human remains from museums and institutions around the world for burial and other traditional disposal in their homelands.

http://www.creativespirits.info/aboriginalculture/people/aboriginal-remains.html

The collection of the samples is part of a history of treating Aboriginal people as less than human and, of course, the scientific understanding of the nineteenth and early twentieth century assigned the bottom rung of humanity to Australian Aborigines.

My understanding is that contemporary research protocols try to build in reciprocal benefits for those studied as well as for the scientific community. For example Aboriginal people suffer from extremely high rates of diabetes and, in part, this seems connected to the absence of genetic adaptations to Western diets. So I could imagine that a research project that could assist in the understanding of and approach to this problem would be accepted.

I don't think that Australians in general have yet embraced genetic testing on a large scale for understanding their origins. In particular I can't imagine Aboriginal people seeing much benefit for themselves in such tests. Aboriginal people have been in Australia for such a long period that none of their origin stories have them coming from anywhere else than here.

I personally would like to see a range of samples from Aboriginal Australians be included amongst all the other ethnic groups studied but I also think that it's important to build a consensus in favour of such testing amongst Aboriginal people and for it to tangible deliver benefits to them. There's a massive life expectancy gap between Aboriginal people and other Australians which needs to be reduced.

Having said this, I have not looked into the circumstances of the genome research published recently and have no comment to make about it.

Dienekes said...

The collection of the samples is part of a history of treating Aboriginal people as less than human and, of course, the scientific understanding of the nineteenth and early twentieth century assigned the bottom rung of humanity to Australian Aborigines.

Samples have been collected from almost every known group on the planet. I really don't see what is exceptional in the case of Australian aborigines. It's not like they have been especially targeted for sample collection above and beyond many other human groups.

I personally would like to see a range of samples from Aboriginal Australians be included amongst all the other ethnic groups studied but I also think that it's important to build a consensus in favour of such testing amongst Aboriginal people and for it to tangible deliver benefits to them. There's a massive life expectancy gap between Aboriginal people and other Australians which needs to be reduced.

I object to such a utilitarian view. We don't undestand most of the genetic causes of diseases such as diabetes even in the most studied of groups, such as Americans. This is the well-known problem of the "missing heritability". Concrete applications of genomics to health problems are rather the exception than the rule, and most diseases have barely been touched by genomics. In short, getting even a full genome sequence has, at present, very little medical benefits, even if you are a Western European.

So, it's impossible to promise tangible benefits to people, when such benefits haven't been forthcoming even in well-studied groups. Moreover, we won't know whether such benefits are to be had unless we actually do the DNA collection and analysis.

Moreover, I object to the notion that tangible benefits are the only concrete way to involve AA. First of all, a lot of people would not expect any benefits for themselves. Many people are interested in helping non-profit science even if it doesn't benefit them. Also, learning about one's past is a tangible benefit, since people aren't just interested about medical stuff, but also about their past.

ssas said...

I think many "Aborigines" are worried now genetics can tell how much real Aboriginal they have.
I am not talking Northern tribes, where this is evident, but some city groups, which have "adopted" many people with questionable native roots. Now they are worried their benefits could be taken away on this basis.

sykes.1 said...

The Andrew Bolt case is relevant here. He was recently convicted of violating the Australian Racial Discrimination Act for writing about how mixed race Australians exploit Australian laws. It's not clear what penalties he faces.

It should be noted that the law applies to any public space, which includes the entire internet and specifically this blog.

Any anthropologist who offends at least one aborigine can be prosecuted, perhaps even in abstentia.

And you thought the brouhaha over Kennewick Man was fun.

Australian blogs cannot even discuss the issues and are being heavily self-censured. Even the comments.

Pascvaks said...

Ethesists and "concerned" others will always have a point to make about such things, as did so many moralists and rule makers in the past. Not to worry! Regardless of any law or ethical standard of conduct, if there's money in it somewhere, someone will deliver the goods. Devistate a tropical rain forest for a few ounces of gold, smuggle in rare birds by hiding them in little bags under clothing, kill a rhino for it's horn, blow up a mosque full of people to get into heaven and earn a few bucks for your poor family, hay the list is like forever long. Rules are fine. But try not to make ones that can't be enforced, it's a real waste of time and hot air. People will do anything for a buck! Always have, always will. But should we all just give up? No, I guess that would make things even worse. What a world!

terryt said...

"In other words, concerns about threats to the credibility of their fairytales, which are called in polite speech religious beliefs, mythology, legends or local lore"

As I understand the situation that is exactly the problem. Australian Aborigines do not wish it shown they came from anywhere other than Australia. Luckily I live in New Zealand where the indigenous people are as keen as anyone to know their pre-history. Mind you, their own myths state they arrived in New Zealand from elsewhere.

"For a long time Aborigines where treated as second class in Australia"

Very much so, even as late as the 1980s when I lived there. I was stunned at the difference between Australia and New Zealand. and New Zealand's relationship with its indigenes is hardly perfect.