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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Ethical research — the long and bumpy road from shirked to shared – Nature (Sarah Franklin | October 2019)0

Posted by Admin in on November 10, 2019
 

From all too scarce, to professionalized, the ethics of research is now everybody’s business, argues Sarah Franklin in the sixth essay in a series on how the past 150 years have shaped science, marking Nature’s anniversary.

In the autumn of 1869, Charles Darwin was hard at work revising the fifth edition of On The Origin of Species and drafting his next book, The Descent of Man, to be published in 1871. As he finished chapters, Darwin sent them to his daughter, Henrietta, to edit — hoping she could help to head off the hostile responses to his debut, including objections to the implication that morality and ethics could have no basis in nature, because nature had no purpose.

That same year, Darwin’s cousin Francis Galton published Hereditary Genius, a book that recast natural selection as a question of social planning1. Galton argued that human abilities were differentially inherited, and introduced a statistical methodology to aid “improvement of the race”. Later, he coined the term ‘eugenics’ to advocate selective reproduction through application of the breeder’s guiding hand.

Darwin’s transformative theory inspired modern biology; Galton’s attempt to equate selection and social reform spawned eugenics. The ethical dilemmas engendered by these two late-nineteenth-century visions of biological control proliferate still. And, as older quandaries die out, they are replaced by more vigorous descendants. That there has never been a border between ethics and biology remains as apparent today as it was 150 years ago. The difference is that many of the issues, such as the remodelling of future generations or the surveillance of personal data, have become as everyday as they are vast in their implications. To work out how to move forward, it is worth looking at how we got here.

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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

Scientists ‘may have crossed ethical line’ in growing human brains – The Guardian (Ian Sample | )0

Posted by Admin in on October 22, 2019
 

Debate needed over research with ‘potential for something to suffer’, neuroscientists say

Neuroscientists may have crossed an “ethical rubicon” by growing lumps of human brain in the lab, and in some cases transplanting the tissue into animals, researchers warn.

The creation of mini-brains or brain “organoids” has become one of the hottest fields in modern neuroscience. The blobs of tissue are made from stem cells and, while they are only the size of a pea, some have developed spontaneous brain waves, similar to those seen in premature babies.

Many scientists believe that organoids have the potential to transform medicine by allowing them to probe the living brain like never before. But the work is controversial because it is unclear where it may cross the line into human experimentation.

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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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