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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

Flying Blind – the Australian Health Data Series: The Ethics Quagmire: Case Studies (Uma Srinivasan | August 2017)0

Posted by Admin in on February 17, 2020
 

Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and  back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.

What is sad for Australian health research is that these numbers do not reflect reseachers’ time spent in actually performing research!

We hope the case studies will shine a light on the complexities and the lack of efficiency and transparency around tapping into de-identified pre-existing administrative data sets from multiple states and federal health data sources.

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(China) Publishers urged to take stronger stance on Uighur persecution – Times Higher Education (Ellie Bothwell | January 2020)0

Posted by Admin in on January 30, 2020
 

Scholars say ensuring vulnerable minorities have given consent to use of their data does not go far enough

Academics are pushing journal publishers to take more drastic action in response to China’s crackdown on minority Muslims in the wake of increasing scrutiny over the global science community’s role in the continued persecution.

There have been rising concerns over Western journals’ publication of papers focusing on the DNA of minority ethnic groups by Chinese scientists affiliated with the country’s surveillance agencies.

More than 1 million Uighurs and other members of predominantly Muslim minority groups are believed to have been locked up in internment camps and there are worries that this research is being used to build databases, facial recognition systems and other methods for monitoring these groups.

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The Secretive Company That Might End Privacy as We Know It – New York Times (Kashmir Hill | January 2020)0

Posted by Admin in on January 26, 2020
 

A little-known start-up helps law enforcement match photos of unknown people to their online images — and “might lead to a dystopian future or something,” a backer says.

Until recently, Hoan Ton-That’s greatest hits included an obscure iPhone game and an app that let people put Donald Trump’s distinctive yellow hair on their own photos.

Another piece of work that almost certainly never went anywhere near a research ethics committee, but will have massive ethical implications  for society.

Then Mr. Ton-That — an Australian techie and onetime model — did something momentous: He invented a tool that could end your ability to walk down the street anonymously, and provided it to hundreds of law enforcement agencies, ranging from local cops in Florida to the F.B.I. and the Department of Homeland Security.
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His tiny company, Clearview AI, devised a groundbreaking facial recognition app. You take a picture of a person, upload it and get to see public photos of that person, along with links to where those photos appeared. The system — whose backbone is a database of more than three billion images that Clearview claims to have scraped from Facebook, YouTube, Venmo and millions of other websites — goes far beyond anything ever constructed by the United States government or Silicon Valley giants.
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