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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.

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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

The picture talk project: Aboriginal community input on consent for research (Papers: Emily FM Fitzpatrick, et al | 2019)0

Posted by Admin in on February 3, 2019
 

Abstract

Background
The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole.

Methods
Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted.

Results
Focus groups with Aboriginal community members (n = 6 focus groups of 3–7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley.

Conclusion
Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Keywords
Research, Consent, Qualitative Methods, Aboriginal, Indigenous, Community, Focus Groups, Pictures, Yarning

Fitzpatrick EFM, Carter M, Oscar J, D’Antoine H, Carter M, Lawford T and Elliott EJ (2019) The picture talk project: Aboriginal community input on consent for research. BMC Medical Ethics (2019) 20:12 https://doi.org/10.1186/s12910-019-0349-y
Publisher (Open Access):  https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0349-y

The Ethical Quandary of Human Infection Studies – Undark (Linda Nordling | November 2018)0

Posted by Admin in on December 4, 2018
 

Sometimes infecting volunteers with a disease can lead to new treatments. But how much risk and compensation is acceptable for those in poor nations

IN FEBRUARY OF last year, 64 healthy adult Kenyans checked into a university residence in the coastal town of Kilifi. After a battery of medical tests, they proceeded, one by one, into a room where a doctor injected them with live malaria parasites. Left untreated, the infection could have sickened or even killed them, since malaria claims hundreds of thousands of lives every year.

This excellent piece about researchers from affluent countries conducting ‘infection studies’ in poor countries raises issues you might not have considered.

But the volunteers — among them casual laborers, subsistence farmers, and young mothers from nearby villages — were promised treatment as soon as infection took hold. They spent the next few weeks sleeping, eating, and socializing together under the watchful eye of scientists, giving regular blood samples and undergoing physical exams. Some grew sick within a couple of weeks, and were treated and cleared of the parasite before being sent home. Those who did not fall ill were treated after three weeks as a precaution and discharged, too.
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As compensation, the volunteers received between $300 and $480 each, or roughly $20 a day, a rate based on the minimum wage for casual laborers in Kenya and the out-of-pocket allowance set for overnight stays by KEMRI, the Kenya Medical Research Institute.
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