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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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(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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(China) China’s Genetic Research on Ethnic Minorities Sets Off Science Backlash – New York Times (By Sui-Lee Wee and Paul Mozur | December 2019)0

Posted by Admin in on December 12, 2019
 

Scientists are raising questions about the ethics of studies backed by Chinese surveillance agencies. Prestigious journals are taking action.

BEIJING — China’s efforts to study the DNA of the country’s ethnic minorities have incited a growing backlash from the global scientific community, as a number of scientists warn that Beijing could use its growing knowledge to spy on and oppress its people.

Two publishers of prestigious scientific journals, Springer Nature and Wiley, said this week that they would re-evaluate papers they previously published on Tibetans, Uighurs and other minority groups. The papers were written or co-written by scientists backed by the Chinese government, and the two publishers want to make sure the authors got consent from the people they studied.

Springer Nature, which publishes the influential journal Nature, also said that it was toughening its guidelines to make sure scientists get consent, particularly if those people are members of a vulnerable group.

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Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking (Papers: Tristan McCaughey, et al | 2016)0

Posted by Admin in on December 1, 2019
 

Abstract
The ability to generate human induced pluripotent stem cells (iPSCs) has opened new avenues for human disease modelling and therapy. The aim of our study was to determine research participants’ understanding of the information given when donating skin biopsies for the generation of patient-specific iPSCs. A customised 35-item questionnaire based on previous iPSC consent guidelines was sent to participants who had previously donated samples for iPSC research. The questionnaire asked pertinent demographic details, participants’ motivation to take part in iPSC research and their attitudes towards related ethical issues. 234 participants were contacted with 141 (60.3 %) complete responses received. The median duration between recruitment and follow-up questioning was 313 days (range 10–573 days). The majority of participants (n = 129, 91.5 %) believed they understood what a stem cell was; however, only 22 (16.1 %) correctly answered questions related to basic stem cell properties. We found no statistically significant difference in responses from participants with different levels of education, or those with a health sciences background. The poor understanding amongst participants of iPSC research is unlikely to be unique to our study and may impact future research if not improved. As such, there is a need to develop an easily understood yet comprehensive consent process to ensure ongoing ethical progress of iPSC biobanking.

Keywords
Stem cell, Informed consent, HeLa, Biobank

McCaughey T., Chen C.Y., De Smit E., Rees G., Fenwick E., Kearns L.S., Mackey D.A., MacGregor C., Munsie M., Cook A.L., Pébay A. & Hewitt A.W. (2016) Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking. Cell and Tissue Banking. 17: 449. https://doi.org/10.1007/s10561-016-9563-8
Publisher: https://link.springer.com/article/10.1007%2Fs10561-016-9563-8

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