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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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.

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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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

(China) Science publishers review ethics of research on Chinese minority groups – Nature (Richard Van Noorden & Davide Castelvecchi | December 2019)0

Posted by Admin in on December 27, 2019
 

Springer Nature and Wiley have concerns about lack of consent in genetics and facial-recognition papers.

Two science publishers are reviewing the ethics of research papers in which scientists backed by China’s government used DNA or facial-recognition technology to study minority groups in the country, such as the predominantly Muslim Uyghur population.

Springer Nature (which publishes Nature) and Wiley want to check that the study participants gave informed consent, after researchers and journalists raised concerns that the papers were connected to China’s heavy surveillance operations in the northwestern province of Xinjiang. China has attracted widespread international condemnation — and US sanctions — for mass detentions and other human-rights violations in the province. The Chinese government says that it is conducting a re-education campaign in the region to quell what it calls a terrorist movement.

“We are very concerned about research which involves consent from vulnerable populations,” says a spokesperson from Springer Nature (Nature’s news team is editorially independent of its publisher).

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