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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Friday afternoon’s funny – Risks already present0

Posted by Admin in on March 27, 2020
 

Cartoon by Don Mayne www.researchcartoons.com
Full-size image for printing (right mouse click and save file)

Some research projects (such as sport-related work) involve participants already engaged in a risky undertaking.  For research ethics reviewers this raises the question of whether their reflection on beneficence is the risks in the substantive activity or only the additional risk introduced by the research activity.

Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent (Papers: Palmira Granados Moreno and Yann Joly | 2016)0

Posted by Admin in on March 11, 2020
 

Abstract
With the progress in bioinformatics, genomics, and epidemiology, biobanks, as repositories of populations’ biological samples as well as of personal and medical information, are becoming an essential research tool. Despite the potential benefits biobanks may bring and the options presented by some of the current biobanks’ consent policies, there remain ethical concerns regarding the autonomy and dignity of research participants if consent is not fully informed as dictated in the terms of traditional informed consent. This article aims at providing an overview of the approaches taken by the main international norms with respect to informed and broad consent and how well these norms are integrated by biobanks or biobank consortia. We conclude that broad consent could be an important tool to achieve the benefits of large-scale biobanks projects. If it is to be accepted, its regulation and implementation need to be mindful of the participant’s dignity and autonomy and sensitive to the need for international coherence and harmonization.

Keywords
Broad consent, comparative analysis of informed consent practices in international biobanks, international biobanks, international biobanks informed consent policies, international biobanks informed consent regulations

Moreno, P.G. and Joly, Y (2016) Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent.  Medical Law International.  7(35) https://doi.org/10.1177/0968533215626773
Publisher: https://journals.sagepub.com/doi/10.1177/0968533215626773

When medical information comes from Nazi atrocities (Papers: Susan E Mackinnon | January 2020)0

Posted by Admin in on March 10, 2020
 

The nerve surgeon Susan Mackinnon discovered that an old but precise textbook she relied on was created by a Viennese anatomist who had dissected Hitler’s victims to produce his detailed illustrations. Should we still be using the illustrations, she asks

I first met the Atlas of Topographical and Applied Human Anatomy1 in 1982, when I was 32, during my hand fellowship at the Curtis National Hand Center in Baltimore. The atlas became my dissection partner during the many long hours spent in the anatomy laboratory at Johns Hopkins Hospital and later at the University of Toronto.

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Also see:
Response to Medical information from Nazi atrocities transgresses the Nuremberg Code by Simon Gordon, Thomas Kadas, Peter Lantos and Afsana Safa

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For several years, I knew the Pernkopf atlas (named after its author, Eduard Pernkopf, chair of anatomy and president of the University of Vienna) only as a unique and valued piece of science and art. However, in the late 1980s, I came across essays by Gerald Weissman, an Austrian born US physician-scientist at New York University, and David Williams, a medical illustrator of Purdue University, Indiana, exposing the origin of my dissection partner,23 calling it the “atlas of the Shoah,” derived during the Holocaust.
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Once I, a gentile, came to know the truth of its origin, my attitude changed. I secured the atlas in my operative room locker, with printed copies of Weissman’s and Williams’s essays slipped into the atlas as a marker to anyone who might use it and a warning to “enter with caution.”
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However, having already spent many years with the atlas, still the most detailed anatomy book I’ve ever seen, I continued to feel the need to refer to it occasionally for the sake of improving my patients’ surgical outcomes. Several times a month, while operating, I would struggle with the anatomical nuances of nerve pathways. The atlas showed me the way—an exact and safe surgical approach to the …
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Mackinnon, S. E. (2020) When medical information comes from Nazi atrocities BMJ 368:l7075
Publisher: https://www.bmj.com/content/368/bmj.l7075

(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

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