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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Data Management Expert Guide (Guidance: CESSDA | December 2017)0

Posted by Admin in on November 5, 2019
 

This guide is designed by European experts to help social science researchers make their research data Findable, Accessible, Interoperable and Reusable (FAIR).

You will be guided by different European experts who are – on a daily basis – busy ensuring long-term access to valuable social science datasets, available for discovery and reuse at one of the CESSDA social science data archives.

Target audience and mission
This guide is written for social science researchers who are in an early stage of practising research data management. With this guide, CESSDA wants to contribute to professionalism in data management and increase the value of research data.

Overview
If you follow the guide, you will travel through the research data lifecycle from planning, organising, documenting, processing, storing and protecting your data to sharing and publishing them. Taking the whole roundtrip will take you approximately 15 hours, however you can also hop on and off at any time.

CESSDA Training Working Group (2017 – 2018). CESSDA Data Management Expert Guide.
Bergen, Norway: CESSDA ERIC. Retrieved from https://www.cessda.eu/DMGuide

Venice ‘time machine’ project suspended amid data row – Nature (Davide Castelvecchi Davide Castelvecchi | October 2019)0

Posted by Admin in on November 2, 2019
 

Disagreements among international partners leave plans to digitize the Italian city’s history in limbo.

Like the city itself, an ambitious effort to digitize ten centuries’ worth of documents that record the history of Venice is at risk of sinking. Two key partners have suspended the Venice Time Machine project after reaching an impasse over issues surrounding open data and methodology. The State Archive of Venice and the Swiss Federal Institute of Technology in Lausanne (EPFL) say they have had to pause data collection, and the archive’s director has raised questions about the usability of the 8 terabytes of information that have already been collected.

A useful illustration of the value of early discussions about data management and about ensuring that metadata is considered as well.

The project sought to digitize documents that stretch over 80 kilometres of shelves in the state archive. These record the minutiae of the city’s administration — from financial transactions to citizens’ addresses and family connections — during its heyday in the Middle Ages and the Renaissance as a republic that for centuries dominated trade in the eastern Mediterranean. Many are written in Latin or the Venetian dialect, and have never been read by modern historians.
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The goal was to make this information freely available online to researchers worldwide. The project also aimed to push the state-of-the-art in text-recognition technology for handwritten documents, using machine learning to automatically read millions of pages and tag their contents so that historians could perform quick searches.
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(Australia) UNSW skin cancer researcher Levon Khachigian hit with string of retractions – ABC News (Elise Worthington and Kyle Taylor | October 2019)0

Posted by Admin in on October 20, 2019
 

Levon Khachigian cuts an imposing figure in the hallways of the UNSW School of Medical Sciences.

This disheartening case isn’t the first time it has been suggested an independent national body should investigate allegations of research misconduct, that Australia’s approach has an inherent conflict of interest problem and something needs to change.

The 55-year-old cell biologist rose to the top of the university’s academic hierarchy, on a salary package once worth more than $250,000 a year.
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In the elite world of academia, where prestige is driven by publication in top scientific journals and research funding is scarce, Professor Khachigian has been a big earner, bringing more than $23 million in funding to the university over his three-decade career.

The cancer and cardiovascular researcher was once regarded as a rising star on the brink of a breakthrough treatment for skin cancer.
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Professor Khachigian is the winner of multiple Eureka prizes, widely regarded as the “Oscars” of Australian science, and once told a newspaper that the toughest part of the job was “when a research paper is rejected for publication on whimsical grounds”.

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Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? (Papers: Mohammad Firdaus Abdul Aziz & Aimi Nadia Mohd Yusof | May 2019)0

Posted by Admin in on October 20, 2019
 

Abstract
As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big data. It is therefore imperative for biobanks to have in place regulatory measures to ensure ethical use of the biomedical big data. Malaysia has yet to introduce specific legislation for the field of biobanking. However, it can be argued that its existing Personal Data Protection Act 2010 (PDPA) has laid down legal principles that can be enforced to protect biomedical big data generated by the biobanks. Consent is a mechanism to enable data subjects to exercise their autonomy by determining how their data can be used and ensure compliance with legal principles. However, there are two main concerns surrounding the current practice of consent in biomedical big data in Malaysia. First, it is uncertain that the current practice would be able to respect the underlying notion of autonomy, and second, it is not in accordance with the legal principles of the PDPA. Scholars have deliberated on different strategies of informed consent, and a more interactive approach has recently been introduced: dynamic consent. It is argued that a dynamic consent approach would be able to address these concerns.

Keywords
Biobanking, Autonomy, Data protection, Informed consent, Dynamic consent

Abdul Aziz, Mohammad Firdaus, and Aimi Nadia Mohd Yusof. 2019. Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? Asian Bioethics Review 11 (2) 1-14.  https://doi.org/10.1007/s41649-019-00086-2.
Publisher: https://link.springer.com/article/10.1007%2Fs41649-019-00086-2

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