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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Is it worth becoming a human guinea pig? The risks and rewards of clinical trials – Radio National: Rear Vision (Annabelle Quince 2016)0

Posted by Admin in on February 25, 2016
 

“It’s estimated that millions of people worldwide take part in clinical trials, but when things go wrong in medical research there can be tragic consequences. Annabelle Quince investigates the ethical dilemmas of testing drugs on humans.

In January, a clinical trial in France went badly wrong. One young man died and several others suffered brain damage. The drug for treating mood disorders such as anxiety was being tested by a Portuguese pharmaceutical company, and the accident happened during phase one—that is, the first time it had been tested on humans.

As investigations into the incident continue in France and Portugal, questions are being raised about how it could have happened at all, and whether there are adequate procedures in place to protect people involved in clinical trials.

Alex O’Meara, a type I diabetic who has himself been involved in a clinical trial, says observers should remember that clinical trials are big business.

‘The way it happens these days is a clinical research organisation, which is a private company, will test a drug after a pharmaceutical company or a manufacturing company has an idea for something that they want to develop and sell,’ says O’Meara, the author of Chasing Medical Miracles: The Promise and Perils of Clinical Trials.”

Click here to read the full story.

Undoing Ethics: Rethinking Practice in Online Research (Books: Whiteman N 2012)0

Posted by Admin in on January 10, 2016
 

“Over the past decade, researchers from different academic disciplines have paid increasing attention to the productivity of online environments. The ethical underpinnings of research in such settings, however, remain contested and often controversial. As traditional debates have been reignited by the need to respond to the particular characteristics of technologically-mediated environments, researchers have entered anew key debates regarding the moral, legal and regulative aspects of research ethics. A growing trend in this work has been towards the promotion of localized and contextualized research ethics – the suggestion that the decisions we make should be informed by the nature of the environments we study and the habits/expectations of participants within them. Despite such moves, the relationship between the empirical, theoretical and methodological aspects of Internet research ethics remains underexplored. Drawing from ongoing sociological research into the practices of media cultures online, this book provides a timely and distinctive response to this need.

This book explores the relationship between the production of ethical stances in two different contexts: the ethical manoeuvring of participants within online media-fan communities and the ethical decision-making of the author as Internet researcher, manoeuvring, as it were, in the academic community. In doing so, the book outlines a reflexive framework for exploring research ethics at different levels of analysis; the empirical settings of research; the theoretical perspectives which inform the researcher’s objectification of the research settings; and the methodological issues and practical decisions that constitute the activity as research. The analysis of these different levels develops a way of thinking about ethical practice in terms of stabilizing and destabilizing moves within and between research and researched communities. The analysis emphasizes the continuities and discontinuities between both research practice and online media-fan activity, and social activity in on and offline environments.”

Whiteman N (2012) Undoing Ethics: Rethinking Practice in Online Research. London: Springer
http://www.springer.com/fr/book/9781461418269

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.)

Griffith University Research Ethics Manual (GUREM)0

Posted by Admin in on May 27, 2015
 

A booklet-based resource manual for researchers and ethics reviewers. Rather than a rulebook the GUREM is a resource for reflective practice in human research. The 46 booklets cover a wide range of topics, such as recruitment, consent, social media in research and the exposure of illegal behaviour. Click here to see a list of the current booklets.

The intended audience for the resource is researchers, ethics reviewers, policy/educational officers and commentators.

Dr Gary Allen is the primary author of the GUREM.

Further information about the GUREM:

1) Web page for the GUREM;
2) A list of the 46 booklets are available upon request;
3) Excerpt of booklets can be provided on request for evaluative purposes; and
4) The consolidated index of the GUREM can be accessed here.

Licenses are available to research institutions to use the GUREM as the foundation of their resource material. The enduring license need only be purchased once for all researchers at that institution.

For five years licensees will receive track change updates of any updates to the GUREM (e.g. arising from the rolling review of the National Statement on Ethical Conduct in Human Research and the new national application form). Click here to see information about previous updates to Booklets of the Manual.

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