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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(China/Gene) Chinese scientist who produced genetically altered babies sentenced to 3 years in jail – Science (Dennis Normile | December 2019)0

Posted by Admin in on January 5, 2020
 

He Jiankui, the Chinese researcher who stunned the world last year by announcing he had helped produce genetically edited babies, has been found guilty of conducting “illegal medical practices” and sentenced to 3 years in prison.

Given the degree of recklessness and premeditation, the lifetime health effects and that the genetic modifications are inheritable, some may feel an even harsher sentence would have been warranted.  Nevertheless, it is welcome to see the Chinese court impose large fines and prison sentences.

A court in Shenzhen found that He and two collaborators forged ethical review documents and misled doctors into unknowingly implanting gene-edited embryos into two women, according to Xinhua, China’s state-run press agency. One mother gave birth to twin girls in November 2018; it has not been made clear when the third baby was born. The court ruled that the three defendants had deliberately violated national regulations on biomedical research and medical ethics, and rashly applied gene-editing technology to human reproductive medicine.
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All three pleaded guilty, according to Xinhua. The court also fined He, formerly of the Southern University of Science and Technology (SUSTech) and known as JK to friends and colleagues, 3 million Chinese yuan ($429,000). His collaborators were identified as Zhang Renli, of a medical institution in Guangdong province, and Qin Jinzhou, from a Shenzhen medical institution; Zhang received a 2-year prison sentence and was fined 1 million yuan, according to Xinhua, whereas Qin was given 18 months in prison with a 2-year reprieve, and a 500,000 yuan fine.
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Sample and data sharing barriers in biobanking: consent, committees, and compromises (Paper: Flora Colledge MA, et al | December 2013)0

Posted by Admin in on January 2, 2020
 

Abstract

The discussion in this paper is not particularly new or surprising but it does highlight yet again that HRECs can often be out of touch with donors wishes.  We have included links to ten other papers on consent and biobanking.

The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a sample without the donor’s consent. In this study, we present the results of 36 semistructured qualitative interviews with Swiss biobanking stakeholders regarding these options and the role of ethics committees in the process of authorizing sharing. Our results show that despite a lack of legal or guideline-based barriers to general consent, some stakeholders and ethics committees have reservations about this method of consent. In most cases, however, a general consent form is already in use. Many interviewees describe processes involving the ethics committees as time-consuming and cumbersome and their requirements as too demanding for donors/patients. Greater awareness of donors’ opinions and preferences and the content of guidelines and recommendations could therefore be helpful for a better justified perspective of biobanking stakeholders and ethical committee members, equally. Finally, it may be necessary to differentiate between procedures governing future samples, where general consent is clearly desirable, and the use of old yet still relevant samples, where the option of using them without consent can be highly beneficial for research.
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Keywords
Biobank, Informed consent, Ethics committee, Data sharing, Sample sharing

Colledge F, Persson K, Elger B, Shaw D. (2014) Sample and data sharing barriers in biobanking: consent, committees, and compromises. Annals of Diagnostic Pathology 18:78-81
Publisher: https://www.sciencedirect.com/science/article/abs/pii/S1092913413001524?via%3Dihub

(China) Academic misconduct standards to be tightened – China Daily Global (Li Yan | October 2019)0

Posted by Admin in on January 2, 2020
 

China has strengthened its fight against academic misconduct by publishing new standards defining plagiarism, fabrication, falsification and other violations of research integrity. Experts believe the clarity will make it easier to discipline researchers who violate the rules.

The document, issued by the Ministry of Science and Technology, has been adopted by 20 government agencies ranging from China’s Supreme People’s Court to the Chinese Academy of Sciences.

Depending on the severity of the offense, punishments can range from canceling a project’s funding to revoking the offender’s titles and permanently banning them from promotion or other research positions. Institutes that connive with or shield violators will also be punished with budget cuts or judicial action.

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(US) This Researcher Exploited Prisoners, Children, and the Elderly. Why Does Penn Honor Him? – The Chronicle of Higher Education (Alexander Kafka, | November 2019)0

Posted by Admin in on December 29, 2019
 

Albert M. Kligman was a larger-than-life dermatologist and entrepreneur instrumental in inventions that brought riches to him and his university. He also performed torturous experiments.

Over the last 12 years we have shared a few pieces about egregious ethical breaches, but we aren’t sure what stunned us most, what was done to those vulnerable Americans or that the track record of the lead researcher is still being celebrated.

“An outstanding clinician, researcher, and educator.” “A visionary leader” who led “an extraordinary life.” That’s how the University of Pennsylvania describes Albert M. Kligman on a fund-raising page for a lectureship in his name. He is also honored by not one but two chaired professorships.
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What the university calls his “pioneering work with Retin-A” was estimated by a student turned critic of Kligman, Bernard Ackerman, as generating in the “many tens of millions.” Kligman himself once described to a television interviewer the sales of the acne medicine as an “explosion …a very considerable sum of money that comes to our department in the form of royalties. We are swimming in cash.”
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