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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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.

Read the rest of this discussion piece

(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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Read the rest of this discussion piece

The Foundation of Knowledge Production: Research Ethics Education in Taiwan (PowerPoint: Chien Chou | September 2018)0

Posted by Admin in on March 24, 2019
 

Outline

1. The Importance of Research Ethics
2. Researchers’Needs for Education
3. Education and Implementation Mechanism of Research Ethics in Taiwan’s Higher Education
4. Concluding Remarks

The Importance of research ethics

• Presents a baseline for all research behaviors
• Protects others, minimizes harm and increases the sum of good
• Supports trust among researchers and between research communities and the public
• Ensures research integrity and quality
• Satisfies organizational and professional demands • Copes with new and more challenging problems

Access Chien Chou’s presentation

The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data (Papers: Gabrielle Samuel, et al | February 2019)0

Posted by Admin in on March 4, 2019
 

Abstract

While this paper is most obviously relevant to countries without a national standard for non-health human research (ie it might seem more useful for New Zealand) than Australia, it does point to institutions having nuanced guidance about the use of Web 2.0 material.
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AHRECS can provide an in-meeting briefing for our HREC/REC that would be 15min pre-recorded presentation (ppt with embedded audio), a video/phone connection for questions and discussion, and a short briefing note, which includes a recommended reading list. The cost of this activity is AUD 900. Send an email to inmeeting@ahrecs.com to find out more.

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media (SM) sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice – disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines.
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Keywords
Evaluation Governance, Research ethics, Social media, Ethics Internet research
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Samuel, G., Derrick, G.E. & van Leeuwen, T. Minerva. (2019). “The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data.” Minerva.
Publisher (Open Access): https://link.springer.com/article/10.1007%2Fs11024-019-09368-3

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