Research Ethics Monthly
ISSN 2206-2483
The challenge of being ‘fit for purpose’
April 10, 2022
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In this incredibly interesting post, Racheal Laugery reflects on an incredibly uncomfortable but very timely question.
Is the current approach to research ethics review fit for purpose?
In the context of the COVID-19 pandemic, border closes and reduced international student income, insufficient government funding and a drive towards commercial research/commercialisation is our current approach to research ethics review Imbil and responsive enough?
What needs to be challenged and
changed? How can we get there? Who will need professional development and capacity building?
This requires an approach to reform that is focused on research ethics reviewers, researchers and research office staff.
Change won’t be quick and easy, but is absolutely necessary to ensure an institution’s arrangements are fit for the time.
Our approach will need to be interactive and responsive to problems that we can’t foresee yet.
What do HREC members think and do when deciding about children’s participation in social research? Results from the MESSI survey
November 30, 2021
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In this guest post, Associate Professor Stephanie Taplin (UTS) reflects upon the reflections and attitudes of members of a research ethics committee when reviewing a project involving sensitive issues, where the participants are young people.
She reflects upon the degree that this consideration is based upon standards and expectations that are often not transparent to researchers and can be an impediment to useful/important research.
This post is based upon a longer research output that was about research exploring those attitudes.
This included whether there were topics that a research ethics committee member would never approve for a research project to explore with young people.
This work points to the need for specialist professional development for committee members relating to research on sensitive issues with young people.
This also raises the question of what guidance material institutions publish for researchers and for reference by research ethics reviewers.
Think of, and treat, consent as a powerful and complex verb, not a strictly defined and constrained noun
November 29, 2021
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The notion of consent and the expectation researchers will seek the prior consent of participants has a long history in human research ethics.
It has been a feature of many of the most infamous ethical Breakers commerce stamps and scandals.
Consequently, it has become a baked in feature of most of the guidelines on human research ethics.
But is that a good thing?
The typical approach to consent in human research doesn’t really work for a number of circumstances, research designs or potential how to participant pools.
Long strict guidelines can compound the error and can risk alienating researchers.
A more nuanced approach that provides guidance on necessary features of consent material can be more helpful than template consent materials.
This is exactly the kind of approach that this called for by the National Statement in Australia
Unnatural justice: Public allegations could cause significant harm to vital clinical trial activity
October 25, 2021
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In this thought-provoking post, Nik Zeps (a consultant with AHRECS and a partner at Chrysalis) discusses the serious harm (in terms of reputation and career, as well as lost useful lines of inquiry) when there are complaints that allege ethical problems with clinical research.
These relate to situations where the clinical research is evaluating different kinds of intervention, where the evidence for the ‘accepted’ treatment might not be clear.
A misunderstanding of such research designs and a visceral reaction to apparent breaches aren’t helpful.
When such allegations are made, the researchers are rarely afforded an opportunity to respond and explain. If they were, one assumes that the manner could be easily cleared up.
We are embarrassed to admit in our own reporting of the cited case we really didn’t grasp the realities of what occurred or called out the very emotive reaction.
Regulation of human epigenetic editing: ensuring international frameworks for governing Human Genome Editing don’t impede vital medical research
August 31, 2021
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In this thoughtful post, Nik Zeps reflects on human genome manipulation in medical research, the ethical guidance in Australia and internationally.
He discusses CRISPR and the furore in 2018 around the ‘genetically modified babies’ in China.
Nik then discusses the degree to which the COVID-19 pandemic has pushed discussions about human genetic manipulation off the media radar.
Nevertheless, there have been important international discussions about the topic, including a new WHO Framework. This topic was recently discussed in a paper by Zeps, Lysaght et al. 2021.
The situation might position the WHO as a major player in the international discussion about human genetic manipulation.
Element Zero: What’s missing from the National Statement to support Consumer and Community Involvement in health research?
April 28, 2021
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In this great post, Mark, Deborah and Ciara discuss a useful new element for the National Statement that relates to genuine involvement, input and participation for consumers/community members.
Mark Israel, Deborah Hersh and Ciara Shiggins
Advocates in health research of Consumer and Community Involvement – a concept better known in the United Kingdom as Patient and Public Involvement (PPI) – argue that it offers a way of building knowledge that incorporates the experiences and perspectives of a range of stakeholders, including patients and members of the public. Such involvement can improve the experience for research participants, enhance the process of informed consent, aid research impact and dissemination. It might also avoid the waste of resources on findings that have little relevance to end users or that cannot be implemented…
Nobody expects…
April 26, 2021
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In this post, Dr Gary Allen reflects on the establishment and conduct of constructive audits.
Dr Gary Allen
When research with current ethics approval is periodically monitored,[1] it is typically a passive process. Institutions, often via their research ethics administration, will ask researchers to self-report on the continued ethical acceptability of a project (and compliance with any conditions of approval). It would not be unreasonable to conclude that self-reporting is not the most effective way to identify if there have been problems with approved projects. Indeed, if things have gone wrong, it is at least possible that the most troublesome researchers might not be entirely honest about what has happened or why.
So, what is the alternative?
Conducting random audits of a small number of active projects…
Tongue in Cheek
March 22, 2021
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Farida Fozdar responds and reflects upon the February 2021 post by Gary Allen and Mark Israel.
Farida Fozdar
The Tower of Babel (Allen and Israel, 2021) is a compelling image when considering issues to do with translation and interpreting and the ethics of social research. Even when we speak the same language, we may not be ‘speaking the same language’, so to speak (excuse the triple metaphor). Talking past each other occurs in many ways but, in communicating the clear purpose and potential risks of one’s research, clarity is vital. Here, I outline a few issues from personal research experience, arguing that the communities themselves may be best placed to identify ethics issues and solutions to translation and interpreting dilemmas.
When working with those from a language different from that of the researchers, it may be the case that the idea of research is not well understood in the culture of origin…
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Featured posts
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It’s not too late to register for today’s free webinar about the 2018 update to the National Statement
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We are thrilled to kick off the AHRECS blog together with our first go
Is it time to extend the required membership of research ethics committees?
September 23, 2020
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Dr Gary Allen It doesn’t seem so long ago that all that HRECs in