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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Eleven tips for working with large data sets – Nature (Anna Nowogrodzki | January 2020)0

Posted by Admin in on January 22, 2020
 

Big data are difficult to handle. These tips and tricks can smooth the way.

Big data are everywhere in research, and the data sets are only getting bigger — and more challenging to work with. Unfortunately, says Tracy Teal, it’s a kind of labour that’s too often left out of scientific training.

“It’s a mindset,” says Teal, “treating data as a first-class citizen.” She should know: Teal was until last month the executive director of The Carpentries, an organization in Oakland, California, that teaches coding and data skills to researchers globally. She says there’s a tendency in the research community to dismiss the time and effort needed to manage and share data, and not to regard it as a real part of science. But, she suggests, “we can shift our mindset to valuing that work as a part of the research process”, rather than treating it as an afterthought.

Here are 11 tips for making the most of your large data sets.

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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

Australian universities must wake up to the risks of researchers linked to China’s military – The Conversation (Clive Hamilton | July 2019)0

Posted by Admin in on July 28, 2019
 

Two Australian universities, University of Technology Sydney and Curtin University, are conducting internal reviews of their funding and research approval procedures after Four Corners’ revealed their links to researchers whose work has materially assisted China’s human rights abuses against the Uyghur minority in Xinjiang province.

UTS, in particular, is in the spotlight because of a major research collaboration with CETC, the Chinese state-owned military research conglomerate. In a response to Four Corners, UTS expressed dismay at the allegations of human rights violations in Xinjiang, which were raised in a Human Rights Watch report earlier this year.

Yet, UTS has been aware of concerns about its collaboration with CETC for two years. When I met with two of the university’s deputy vice chancellors in 2017 to ask them about their work with CETC, they dismissed the concerns.

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(US) Rounding up the Belmont Report Retrospectives – Amp@sand (May 2019)0

Posted by Admin in on June 27, 2019
 

Last month brought the 40th anniversary of the publishing of the Belmont Report, and along with that milestone came a reflection on how its values, conclusions, and imperatives have changed in the intervening years. A celebration of its durability has been accompanied by a necessary reckoning with the ways that a 40-year-old document may be ill-equipped to process the ethical issues brought about by technological, cultural, and political changes. Here, we’ve gathered a range of resources that look back on 40 years of the Belmont Report.

Safeguards for human studies can’t cope with big data
Nature
This provocative piece explores the ways in which the Belmont Report is insufficient for dealing with revolutionary digital technologies, arguing that “data science overlooks risks to human participants by default” and that it is “past time for a Belmont 2.0.” That new summit, the author argues, would need to engage with the currently “poorly understood risks and harms” that big data researches poses to humans.

A Belmont Report for Health Data (abstract available)
The New England Journal of Medicine
HIPAA offers robust protection of a limited range of data, but in 2019, the demands on humans’ health data come from far more directions than the 1996 legislation could anticipate. The authors of this NEJM piece call for a coordinated expansion of the scope of ethical review of the gathering, use, and manipulation of health data to account for sources such as “social-media platforms, health and wellness apps, smartphones [and] life insurers,” citing concerns about reidentification of deidentified data, discrimination, health profiling, and more.

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