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

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…

Google health-data scandal spooks researchers – Science (Heidi Ledford | November 2019)0

Posted by Admin in on January 12, 2020
 

Scientists fear the controversy over the Nightingale project will undermine trust in research.

Google and one of the largest health-care networks in the United States are embroiled in a data-privacy controversy that researchers fear could jeopardize public trust in data-sharing practices and, potentially, academic studies.

At issue is a project dubbed Nightingale that gives Google access to the health-care information, including names and other identifiable data, of tens of millions of people without their knowledge. The people were treated at facilities run by the health network Ascension, which is based in St Louis, Missouri.

Google says that Nightingale, first reported in The Wall Street Journal on 11 November, is meant to develop technology that would enable Ascension to deliver improved health care.

Read the rest of this discussion piece

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

Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error (Papers: Ruth Macklin, Charles Natanson | January 2020)0

Posted by Admin in on January 7, 2020
 

Abstract
Comparative effectiveness studies, referred to here as “usual-care” trials, seek to compare current medical practices for the same medical condition. Such studies are presumed to be safe and involve only minimal risks. However, that presumption may be flawed if the trial design contains “unusual” care, resulting in potential risks to subjects and inaccurately informed consent. Three case studies described here did not rely on clinical evidence to ascertain contemporaneous practice. As a result, the investigators drew inaccurate conclusions, misinformed research participants, and subjects’ safety was compromised. Before approving usual-care protocols, IRBs and scientific review committees should evaluate the quality and completeness of information documenting usual-care practices. Guidance from governmental oversight agencies regarding evidence-based documentation of current clinical practice could prevent similar occurrences in future usual-care trials. Accurate information is necessary to ensure that trials comply with government regulations that require minimizing research risks to subjects and accurate informed consent documents.

KEYWORDS:
Human subjects research; IRB (Institutional Review Board); informed consent; risk/benefit analysis

Macklin, R. & Natanson, C. (2019) Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error. Americaan Journal of Bioethics. 20(1):31-39. doi: 10.1080/15265161.2019.1687777.
Publisher: https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1687777

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