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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Australian biobank repatriates hundreds of ‘legacy’ Indigenous blood samples – Science (Dyani Lewis | December 2019)0

Posted by Admin in on January 28, 2020
 

The return is part of a groundbreaking approach that could inspire other institutions grappling with how to use historical samples ethically in research.

Last month, the Galiwin’ku community of Elcho Island off the coast of northern Australia celebrated the return of more than 200 vials of blood that were collected from their ancestors half a century ago, before modern research principles on informed consent existed. Unbeknownst to the Galiwin’ku community, the blood vials had been in freezers at the Australian National University in Canberra ever since.

It is great to see community activism and voice finally achieve an ethical outcome on a historical wrong.

Many Indigenous Australian communities believe that the remains of their people, including blood and hair, must return to their ancestral home, or Country, to be at peace. Having the blood vials returned “meant a lot to us”, says Ross Mandi Wunungmurra, chair of the Yalu Aboriginal Corporation, the community organization that helped negotiate the samples’ return. Mandi is one of several hundred living community members whose own blood was collected after a typhoid outbreak in 1968.

Before the samples of the deceased were repatriated, the relatives gave permission for DNA to be extracted from the blood, while those still alive offered fresh samples. The genetic information will be stored in the biobank of the National Centre for Indigenous Genomics (NCIG), which the Australian National University (ANU) established specifically to manage its historical samples.
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Read the rest of this discussion piece

Friday afternoon’s funny – Consent… b o r i n g0

Posted by Admin in on January 24, 2020
 

Cartoon by Don Mayne www.researchcartoons.com
Full-size image for printing (right mouse click and save file)

Consent has become one of the areas of human research ethics where the conceit/ritual/rules have supplanted actually conducting research ethically.

There’s ‘consent’ and then there’s consent: Mobilising Māori and Indigenous research ethics to problematise the western biomedical model (Papers: Kiri West-McGruer | January 2020)0

Posted by Admin in on January 23, 2020
 

Abstract

A fascinating recent paper from New Zealand reflecting on Māori research ethics, consent, First People, collective outlooks, sociology, big data and genuine respect

Challenging western research conventions has a strong documented history in Indigenous critical theory and Kaupapa Māori research discourse. This article will draw from the existing research in these fields and expand on some of the core critiques of the biomedical model in Māori research environments. Of interest are the tensions produced by an over-reliance on individual informed consent as the panacea of ethical research, particularly when the research concerns communities who prioritise collective autonomy. These tensions are further exacerbated in research environments where knowledge is commodified and issues of knowledge ownership are present. Continuing a critique of the informed consenting procedure, this article considers its role in emulating a capitalist exchange of goods and perpetuating a knowledge economy premised on the exploitation of Indigenous people, resources and knowledge. Finally, this article will consider emerging ethical concerns regarding secondary data use in an era of big data.
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Keywords
Informed consent, collective autonomy, Māori research ethics, western biomedical model, scandal and response

West-McGruer, K. (2020). There’s ‘consent’ and then there’s consent: Mobilising Māori and Indigenous research ethics to problematise the western biomedical model. Journal of Sociology. https://doi.org/10.1177/1440783319893523
Publisher: https://journals.sagepub.com/doi/abs/10.1177/1440783319893523
ResearchGate: https://www.researchgate.net/publication/338556502_There’s_’consent’_and_then…

Friday afternoon’s funny – Research during a disaster0

Posted by Admin in on January 10, 2020
 

Cartoon by Don Mayne www.researchcartoons.com
Full-size image for printing (right mouse click and save file)

In the context of more frequent and severe climate-change-fuelled natural disasters, researchers need to be empathetic and respectful of the context in which our projects are conducted.  AHRECS sympathies and best wishes go out to anyone affected by the current mega-fires or other disasters.

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