ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

A Star Surgeon Left a Trail of Dead Patients—and His Whistleblowers Were Punished – LeapsMag (Eve Herold | October 2018)0

Posted by Admin in on February 22, 2019
 

[Editor’s Note: This is the first comprehensive account of the whistleblowers’ side of a scandal that rocked the most hallowed halls in science – the same establishment that just last week awarded the Nobel Prize in Medicine. This still-unfolding saga is a cautionary tale about corruption, hype, and power that raises profound questions about how to uphold integrity in scientific research.]

When the world-famous Karolinska Institutet (KI) in Stockholm hired Dr. Paolo Macchiarini, he was considered a star surgeon and groundbreaking stem cell researcher. Handsome, charming and charismatic, Macchiarini was known as a trailblazer in a field that holds hope for curing a vast array of diseases.

This horrifying case will be depressingly familiar for New Zealand readers, because it could easily be described as Sweden’s v own ‘unfortunate experiment’

He claimed that he was regenerating human windpipes by seeding plastic scaffolds with stem cells from the patient’s own bone marrow—a holy grail in medicine because the body will not reject its own cells. For patients who had trouble breathing due to advanced illness, a trachea made of their own cells would be a game-changer. Supposedly, the bone marrow cells repopulated the synthetic scaffolds with functioning, mucus-secreting epithelial cells, creating a new trachea that would become integrated into the patient’s respiratory system as a living, breathing part. Macchiarini said as much in a dazzling presentation to his new colleagues at Karolinska, which is home to the Nobel Assembly – the body that has awarded the Nobel Prizes in Physiology or Medicine since 1901.
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Karl-Henrik Grinnemo was a young cardiothoracic surgeon and researcher at Karolinska in 2010, when Macchiarini was hired. “He gave a fantastic presentation with lots of animation and everyone was impressed,” Grinnemo says of his first encounter with Macchiarini. Grinnemo’s own work focused on heart and aortic valve regeneration, also in the field of stem cell research. He and his colleagues were to help establish an interdisciplinary umbrella organization, under Macchiarini’s leadership, called the Advanced Center for Translational Regenerative Medicine, which would aim to deliver cures from Karolinska’s world-class laboratories to the bedsides of patients in desperate need.
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Read the rest of this discussion piece

Children in Social Research: Do Higher Payments Encourage Participation in Riskier Studies? (Stephanie Taplin, et al | February 2019)0

Posted by Admin in on February 18, 2019
 

Abstract

Full disclosure, columns on the advisory panel for this work, But this is a great paper with disciplinary application.

The MESSI (Managing Ethical Studies on Sensitive Issues) study used hypothetical scenarios, presented via a brief online survey, to explore whether payment amounts influenced Australian children and young people to participate in social research of different sensitivity. They were more likely to participate in the lower sensitivity study than in the higher at all payment levels (A$200 prize draw, no payment, $30, or $100). Offering payments to children and young people increased the likelihood that they would agree to participate in the studies and, in general, the higher the payments, the higher the likelihood of their participating. No evidence of undue influence was detected: payments can be used to increase the participation of children and young people in research without concerns of undue influence on their behavior in the face of relatively risky research. When considering the level of payment, however, the overriding consideration should be the level of risk to the children and young people.
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Keywords
children and adolescent, pediatrics, justice, participant selection, inclusion, recruitment, payment for research participation, research ethics, risks, benefits, and burdens of research, beneficence and nonmaleficence, vignette studies, decision-making capacity, surrogate decision makers, parental consent, child assent, voluntariness, coercion
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Taplin, S., Chalmers, J., Hoban, B., McArthur, M., Moore, T. and Graham, A. (2019) Research Ethics Committees’ Oversight of Biomedical Research in South Africa: A Thematic Analysis of Ethical Issues Raised During Ethics Review of Non-Expedited Protocols. Journal of Empirical Research on Human Research Ethics.
Publisher:

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