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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Genomic Research Through an Indigenous Lens: Understanding the Expectations (Nanibaa’ A. Garrison, et al | August 2019)0

Posted by Admin in on April 2, 2019
 

Abstract

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 30, 2019. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Garrison, N. A., Hudson, M., L. Ballantyne, LL., Garba, I. Martinez, A., Taualii, M., Arbour L., Caron, NR. and Rainie, SC. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20(1)
https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434

On “truly” understanding the risk – The Ethics Blog (Pär Segerdahl | March 2019)0

Posted by Admin in on March 28, 2019
 

Pär SegerdahlIt is a well-known psychological fact that people have great difficulties to understand probabilistic risks. What does it actually mean that the risk of developing breast cancer the next ten years is fifteen percent? In addition to the difficulties of understanding probabilities, mathematical expressions can cause a false appearance of exactitude and objectivity. It is often about uncertain evaluations, but expressed in seemingly definitive figures.

At our Monday seminar, Ulrik Kihlbom discussed another difficulty with understanding risk information. It can be difficult to understand not only the probabilities, but also what it is you risk experiencing. Sometimes, people face enormously complex choices, where the risks are high, but also the benefits. Perhaps you suffer from a serious disease from which you will die. However, there is a treatment, and it may work. It is just that the treatment has such severe side effects that you may die even from the treatment.

Ulrik Kihlbom interviewed physicians treating patients with leukemia. The doctors stated that patients often do not understand the risks of the treatment they are offered. The difficulty is not so much about understanding the risk of dying from the treatment. The patients understand that risk. However, the doctors said, no one who has not actually seen the side effects understand that the treatment can make you so incredibly ill.

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(Australia Queensland case) Universal Medicine research conducted by devotees won’t be pulled by Queensland uni – ABC (Josh Robertson | March 2019)0

Posted by Admin in on March 25, 2019
 

A top Australian university has stood by studies into the health benefits of a group that a jury found was a “dangerous cult” making false healing claims, despite its own medical researchers failing to disclose they were devotees.

The investigation finding, as reported by the ABC, isn’t the most bewildering/troubling element of this case – but it’s pretty close.

A 10-month investigation by the University of Queensland (UQ) has cleared the researchers of academic misconduct despite finding they did not fully detail their involvement with Universal Medicine (UM).
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The studies were published in overseas journals and explored the benefits of UM treatments including “esoteric breast massage” and proposed clinical studies in Vietnamese hospitals that would be forbidden in Australia.
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Academic Behind Cambridge Analytica Data Mining Sues Facebook for Defamation – New York Times (Matthew Rosenberg | March 2019)0

Posted by Admin in on March 24, 2019
 

WASHINGTON — The academic who helped Cambridge Analytica vacuum up private information from tens of millions of Facebook profiles sued the social media giant on Friday, arguing that the company defamed him when it claimed he had lied about how the data was going to be used.

Since the full scope of Cambridge Analytica’s data mining was revealed last year, Facebook has repeatedly tried to shift blame for the privacy breach onto the academic, Aleksandr Kogan. Facebook executives — including the chief executive, Mark Zuckerberg — have said Mr. Kogan told Facebook that the data was for academic purposes when it was being collected for use in political campaigns.

Mr. Kogan, 32, a former psychology professor, used a quiz app to collect the data, and has insisted that the fine print accompanying his app said the information could be used commercially. That was an outright violation of Facebook’s rules at the time, but the company does not appear to have regularly checked that apps were complying.

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