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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(China) Study of China’s ethnic minorities retracted as dozens of papers come under scrutiny for ethical violations – Retraction Watch (Adam Marcus | August 2020)0

Posted by Admin in on August 11, 2020
 

A legal journal has retracted a 2019 article on the facial genetics of ethnic minorities in China for ethics violations, and the publisher, Springer Nature, is investigating more than two dozen other articles for similar concerns.

The article, “Y Chromosomal STR haplotypes in Chinese Uyghur, Kazakh and Hui ethnic groups and genetic features of DYS448 null allele and DYS19 duplicated allele,” appeared in the International Journal of Legal Medicine.

Three of the authors were affiliated with the notorious Karamay Municipal Public Security Bureau, which the U.S. government hit with sanctions in October 2019 for being:

implicated in human rights violations and abuses in the implementation of China’s campaign of repression, mass arbitrary detention, and high-technology surveillance against Uighurs, Kazakhs, and other members of Muslim minority groups in the XUAR.

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(Australia) Why did a journal suddenly retract a 45-year-old paper over lack of informed consent? – Retraction Watch (Adam Marcus | July 2020)0

Posted by Admin in on July 26, 2020
 

A journal has retracted a 45-year-old case study over concerns that the authors had failed to obtain proper informed consent from the family they’d described.

Part of good governance is recognising when a tough position is just silly. Not too long ago, AHEC took a stance that cell lines, for instance, could still be used even though consent was not a routine part of the process 30+ years ago. There has to be a balance between respect and common sense. In this instance, no one would have noticed if it hadn’t been retracted. Perhaps it should highlight the need to have routine mechanisms in place for consent for case series.

The article, “Stickler syndrome report of a second Australian family,” appeared in Pediatric Radiology, a Springer Nature title, in 1975. The first author was Kazimierz Kozlowski, a prominent radiologist who was born in Poland and worked in the United States and Australia, where he studied skeletal diseases in children.
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Stickler syndrome is an inherited disorder marked by defects in the skeleton, eyes and other organ systems. The condition affects roughly one in 7,500 babies in the United States, although the true incidence may be somewhat higher because some cases are mild enough to go undiagnosed.
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According to the retraction notice:

The Editors have retracted this article [1] as is it is not clear whether parental consent was provided for publication of the images and case. Given the age of the article we have been unable to verify this, therefore the article is no longer available online in order to protect the privacy of the individual. Both authors agree to this retraction.

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(US) Ethics questions swirl around historic Parkinson’s experiment – STAT (Sharon Begley | May 2020)0

Posted by Admin in on May 30, 2020
 

A secretive experiment revealed this week, in which neurosurgeons transplanted brain cells into a patient with Parkinson’s disease, made medical history. It was the first time such “reprogrammed” cells, produced from stem cells that had been created in the lab from the man’s own skin cells, had been used to try to treat the degenerative brain disease. But it was also a bioethics iceberg, with some issues in plain sight and many more lurking.

This story raises an interesting bioethics question.  Should the wealthy be able to fund research, with a  view to receiving the treatment it develops?

In 2013, the soon-to-be patient, George Lopez, gave $2 million to underwrite research on cells in lab dishes and rats that was required to show that the surgery might be safe and possibly even effective. Lopez, a former physician and the wealthy founder of a medical equipment company, also paid for the legal work required to get Food and Drug Administration approval for the two surgeries. Cells were implanted on the left side of Lopez’s brain in September 2017 and the right side in March 2018.
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“When individuals paying to fund research leading to a therapy are also the first to receive it, there are concerns,” said Brian Fiske, vice president for research at the Michael J. Fox Foundation, which funds research on Parkinson’s.
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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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