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

(China & Australia) ANU study says China deliberately falsifying data on organ transplants – The Canberra Times (Kirsten Lawson | November 2019)0

Posted by Admin in on February 21, 2020
 

New research blows the lid on China’s claim to have stopped using prisoners and groups such as Falun Gong for organ donation, finding that China appears to have systematically falsified its official data.

The Australian National University research, published on Friday, said analysis of the data implied “deliberate human intervention”, showing centrally coordinated data falsification “has clearly taken place”.

Simply, the rise in the numbers of transplants was “too neat to be true” and appeared to be generated using a simple quadratic equation, familiar to high school students.

Read the rest of this news story

(China) ANU study says China deliberately falsifying data on organ transplants – The Canberra Times (Kirsten Lawson | November 2019)0

Posted by Admin in on January 31, 2020
 

New research blows the lid on China’s claim to have stopped using prisoners and groups such as Falun Gong for organ donation, finding that China appears to have systematically falsified its official data.

The Australian National University research, published on Friday, said analysis of the data implied “deliberate human intervention”, showing centrally coordinated data falsification “has clearly taken place”.

Simply, the rise in the numbers of transplants was “too neat to be true” and appeared to be generated using a simple quadratic equation, familiar to high school students.

Read the rest of this discussion piece

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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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

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