ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Resource Library

Research Ethics MonthlyAbout Us

ResourcesFirst People

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Aboriginal genome analysis comes to grips with ethics – Nature (Ewen Callaway | September 2011)0

Posted by Admin in on May 12, 2019
 

Sequencing effort provides a model for future studies of museum samples.

En route from Sydney to Perth, Australia, in the early 1920s, British ethnologist Alfred Cort Haddon acquired a tuft of human hair from a young Aboriginal man. He added it to his sizeable collection of hair from people living around the world.

Ninety years later, those locks have yielded the first complete genome sequence of an Aboriginal Australian, and provided clues about the timing of human migrations from Africa to Asia1 (see ‘Early human explorers charted a bold course’). The work has also underscored the bioethical dilemmas involved in plumbing the genomes of indigenous populations — especially when the DNA comes from an archived specimen such as Haddon’s. “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.

The genome project, led by Eske Willerslev at the University of Copenhagen, received approval for the work from a group that represents Aboriginals in the region in which the man probably lived. 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.

Read the rest of this discussion piece

Indigenous groups look to ancient DNA to bring their ancestors home – Nature (Nicky Phillips – April 2019)0

Posted by Admin in on May 9, 2019
 

Local communities and geneticists are working together to sequence DNA from remains that were taken from their homelands decades ago.

Several years ago, Gudju Gudju Fourmile welcomed back several members of his Yidinji community who had been taken from their homes in northern Australia almost a century ago. Like many other Indigenous communities in Australia, the Yidinji have worked for decades to bring the bodies of their ancestors home — which Aboriginal communities describe as returning to Country.

Many of the ancestors are off Country as a result of the dehumanizing practices of the nineteenth and early twentieth centuries, when it was common for white collectors to loot graves and sell the remains of Aboriginal people to museums in Australia, the United Kingdom and other countries. “When our remains are off Country, we try to make sure they come back,” says Fourmile, an elder in the community who lives in Cairns. “They need to be comfortable. That’s a big thing for many tribal groups.” And when his community finally reburied its ancestors in 2014, “everybody was so happy. And the Country felt good again,” Fourmile says.

Before the Yidinji elders laid their ancestors to rest, they received a request from scientists who had been analysing the DNA of living community members: could they sequence the ancestors’ genomes, too? With permission granted, a team led by evolutionary geneticist David Lambert at Griffith University in Brisbane extracted DNA from the remains of one individual, and confirmed that the ancient person was closely related to Yidinji people alive today1,2. “When you find something out like that, you jump for joy,” says Fourmile. The event also marked a turning point in the mindset of the community, he says, when members started to realize the potential of DNA analysis to help bring their people back home.

Read the rest of this discussion piece

‘They’re not property’: the people who want their ancestors back from British museums – The Guardian (David Shariatmadari | Apr 2019)0

Posted by Admin in on April 25, 2019
 

The remains of indigenous people from all over the world have ended up in various British institutions. Why do their descendants have so much trouble getting them returned?

In November 2011, Ned David travelled the 8,500 miles from his home on Thursday Island, off the tip of Queensland, Australia, to the Natural History Museum in London. He was on a mission to collect the bones of his ancestors. The material included skulls, a jawbone and other fragments from the Torres Strait archipelago, collected by Europeans in the 19th century as scientific specimens and anthropological curios. The museum had agreed that the remains should be given back to their “originating community”, and it was finally time to take them home.

A private ceremony was held – David is reluctant to share the details with outsiders – and afterwards he and his fellow islanders went back to their hotel. But the mood wasn’t celebratory. “Mate,” he says, “it was sombre with a capital ‘S’. There was sort of this eerie feeling after all the hoo-ha and the media, and whatever. We sat around and no one spoke. I think it took a long time to realise the significance of what we had done.”

The handover had followed a consultation in which islanders were asked what they wanted to do about body parts that were sitting in collections on the other side of the world. Feelings ran high. “It’s probably one of those rare exercises we have done as a nation in which we were in total agreement with each other,” says David, who chairs the Gur A Baradharaw Kod, or Torres Strait Sea and Land council. “As one elder said: ‘How would you feel knowing that one of your family members is in some strange place and, more importantly, hasn’t been afforded the right burial?’ That has an impact on the psyche of a group.”

Read the rest of this discussion piece

Genomic Research Through an Indigenous Lens: Understanding the Expectations (Nanibaa’ A. Garrison, et al | August 2019)0

Posted by Admin in on April 2, 2019
 

Abstract

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 30, 2019. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Garrison, N. A., Hudson, M., L. Ballantyne, LL., Garba, I. Martinez, A., Taualii, M., Arbour L., Caron, NR. and Rainie, SC. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20(1)
https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434

0