


Element Zero: What’s missing from the National Statement to support Consumer and Community Involvement in health research?
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…

Why university research ethics committees are vital
In this post Daniel Sokol writes about a troubling research integrity/human research ethics case that relates to Poland, the UK and Australia.
Daniel Sokol
When I sat on the Ministry of Defence’s Research Ethics Committee, some research projects were potentially dangerous. The risks of testing a new piece of military diving equipment, for example, are obvious. If it malfunctions, the volunteer could drown or suffer brain damage. The risks of historical research can be more subtle but they are nonetheless real, as shown by a recent case involving the University of Warwick.
Dr Anna Hájková, an associate professor of modern continental European history, researches the queer history of the Holocaust. She claimed that a Jewish prisoner may have engaged in a lesbian sexual relationship with a Nazi guard in Hamburg in 1944.
After the war, the prisoner worked as an actress and emigrated from…

A big bear trap on the horizon
Many Australian research bodies link to the National Statement. They do so through websites, policy documents, professional development material and other resources.
This is logical and makes it easier for researchers and others to access the national policy/guidance material.
Another reason to do this is that it makes it easier for researchers to see the external impetus for the institution’s arrangements and provides a source of further information and guidance.

A rose by any other name….?
As both a researcher and a research administrator in healthcare, one of the more vexing issues that I have to deal with on an almost daily basis is how to manage what are termed quality assurance, quality improvement and audit activities. In its 2014 publication entitled “Ethical Considerations in Quality Assurance and Evaluation Activities”, the NHMRC (NHMRC QA guidance) suggests that these can be loosely gathered together under an umbrella term of Quality Assurance (QA) and/or evaluation. I believe this construct is wrong and reinforces a longstanding approach to ethics review that relies on the category of an investigative activity to determine the level of review that is used. This approach is problematic and leads to some significant unintended consequences.

If you build it, they will come- 2020 Human Research Ethics Committee (HREC) Training Conference (online) 18-20 Nov
Approximately 2.5 months from inception to execution, a veritable cornucopia of Australia’s thought leaders on topics such as consent, voluntary

A poor call and two missed opportunities, but otherwise not a bad proposed revision to NS s5
In this post, Gary, Mark and Kim refect on the draft update to Section 5 of the Australia’s National Statement.
“In recent years in Australia, we have seen some painful cases where research ethics review delegated to a non-HREC review body has failed to guard against projects that proved to be embarrassing for their host institution (see, for example, the ‘Racist bus driver’ and ‘Laughing at the disabled’ projects)….”

Reframing Indigenous consultation: engagement and risk management
Lindsey Te Ata o Tu MacDonald and commentary by Mandy Downing As a member and then chair of both a
What are questionable research practices as reported by ECRs in STEMM in Australia?
Katherine Christian, Carolyn Johnstone, Jo-ann Larkins, Wendy Wright and Michael Doran Katherine Christian, Federation University Australia Carolyn Johnstone, Federation University
Categories
Featured posts

Unnatural justice: Public allegations could cause significant harm to vital clinical trial activity
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.
Strategies for resolving ethically ambiguous scenarios
During the fall of 2013 and spring of 2014, I traveled to numerous universities
The complex art of benefit-sharing
In community-based participatory action programs (programs which have a research component but which are

Should we accept funding for facial recognition research, and other dilemmas?
Gary Allen, Mark Israel and Colin Thomson|
PEER REVIEWED
In the 1980s and 1990s, many research institutions made the principled and commendable decision not to accept funding from the tobacco industry.
This reflected the recognition of the awful health impacts of tobacco use and the degree to which the industry was muddying the waters of public debate with academic and clinical research questioning the veracity of the overwhelming body of evidence that clearly showed the dire dangers of activity such as smoking. While we continue to be shocked by cases such those like the research of Hans J Eysenck (and this), for the main it is accepted that receiving funding from the tobacco industry is not in the public’s best interest.