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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…

(Queensland, Australia) Ex-judge to investigate controversial marine research – Times Higher Education (John Ross | January 2020)0

Posted by Admin in on January 11, 2020
 

An Australian university has launched an investigation into the research record of a discredited scientist it educated, as findings by academics who supervised her doctoral training are challenged.

James Cook University said it has appointed an external panel to look for evidence of misconduct in the research conducted by marine biologist Oona Lönnstedt between 2010 and 2014, when she was undertaking PhD studies at the Queensland institution.

The university said the panel’s as yet unidentified members include “eminent academics with expertise in field work, marine science and ethics” and a former federal court judge.

Read the rest of this news story

China Uses DNA to Map Faces, With Help From the West – New York Times ( Sui-Lee Wee & Paul Mozur | December 2019)0

Posted by Admin in on January 9, 2020
 

TUMXUK, China — In a dusty city in the Xinjiang region on China’s western frontier, the authorities are testing the rules of science.

Does your institutional guidance material speak to situations such as this, including secondary use that could present a risk to a population of people?  Do you have mechanisms to manage institutional conflicts of interest?  If not, this story highlights why such arrangements could be important.

With a million or more ethnic Uighurs and others from predominantly Muslim minority groups swept up in detentions across Xinjiang, officials in Tumxuk have gathered blood samples from hundreds of Uighurs — part of a mass DNA collection effort dogged by questions about consent and how the data will be used.
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In Tumxuk, at least, there is a partial answer: Chinese scientists are trying to find a way to use a DNA sample to create an image of a person’s face.
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The technology, which is also being developed in the United States and elsewhere, is in the early stages of development and can produce rough pictures good enough only to narrow a manhunt or perhaps eliminate suspects. But given the crackdown in Xinjiang, experts on ethics in science worry that China is building a tool that could be used to justify and intensify racial profiling and other state discrimination against Uighurs.
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Read the rest of this discussion piece

International Policy Frameworks for Consent in Minimal-risk Pragmatic Trials (Papers: Tanya J. Symons, et al | November 2019)0

Posted by Admin in on December 17, 2019
 

Abstract

There is intense debate around the use of altered and waived consent for pragmatic trials. Those in favor argue that traditional consent compromises the internal and external validity of these trials. Those against, warn that the resultant loss of autonomy compromises respect for persons and could undermine trust in the research enterprise.

This article examines whether international ethical guidelines and the policy frameworks in three countries—the United States, England, and Australia—permit altered and waived consent for minimal-risk pragmatic trials conducted outside the emergency setting. Provisions for both are clearly articulated in U.S. regulations, but many countries do not have equivalent frameworks. Investigators should not assume that all consent models permitted in the United States are legal in their jurisdictions, even if they are deemed ethically defensible.

The authors summarize ethical and regulatory considerations and present a framework for investigators contemplating trials with altered or waived consent.

Symons, T.J., Zeps, N., Myles, P.S., Morris, J.M. & Sessler, D.I. (2019) International Policy Frameworks for Consent in Minimal-risk Pragmatic Trials. Anesthesiology 2020;132(1):44-54. doi: https://doi.org/10.1097/ALN.0000000000003020.
Publisher: https://anesthesiology.pubs.asahq.org/article.aspx?articleid=2756350

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