In her latest thought-provoking post Stephanie Taplin reflects on social research with children/young adults and the impact of offering them incentives in the form of payments.
These matters have been controversial for research ethics committee and resulted in a block of items in the review feedback from the reviewing committee/s.
Despite the authority provided by the National Statement on Ethical Conduct in Human Research (NHMRC, 2007, updated 2018) HRECs can be nervous about approving such research with incentives.
Despite this difficulty for reviewers, incentives in the form of payments definitely increases the chances that a young person will respond to a recruitment strategy.
Stephanie’s work has highlighted the degree to which a review body may be more comfortable with the offer of a chance to win and an incentive in a prize draw, at values over ten times as high as the direct incentive payment.
Another area of tension between the preferences of review body and young people is the difference between face-to-face interviews and anonymous questionnaires.
In this post Stephanie reflects on why researchers should engage with HRECs on these matters, rather than choose a path most likely to be accepted immediately by a committee.
Think of, and treat, consent as a powerful and complex verb, not a strictly defined and constrained noun
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
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.
In this post Daniel Sokol writes about a troubling research integrity/human research ethics case that relates to Poland, the UK and Australia.
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…
Gary Allen, Mark Israel and Colin Thomson|
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.
Bob Milstein See below For many of us, preparing the Participant Information and Consent Form (PICF) for a research project
Nik Zeps and Tanya Symons AHRECS Consultant Breakthroughs in medicine often highlight the existing limitations of the frameworks established to
Gary Allen, Carolyn Ehrlich, Michael Norwood, Delena Amsters and Maddy Slattery’s post reflecting on great engagements with disability reference groups.
Here, we aim to share insights from a group of Griffith University researchers and a consumer reference group, who worked together on a research project during the development of materials and methods, as well as in the dissemination of research outcomes. The research project we conducted aimed to explore the research experience of people with acquired disability. We wanted to understand what researchers could do better to be more inclusive of people who are often described as vulnerable or marginalised by the National Statement and subsequently Human Research Ethics Committees. We wanted to know how to best include them as participants in, rather than subjects of, research.
This is not a post advocating for the use of reference groups for research involving those with disability and chronic health conditions. Calls for respectful inclusion have already been eloquently made…
The use of biospecimens in research is a vital tool in the development of
In this post, Gary Allen and Nik Zeps explore the human research ethics arguments and imperatives that only allow for the sharing of data, but establish a public good that can make sharing expected and essential.
This expectation should shape the approach to consent, the framing of assurances given to potential participants about confidentiality and e reflected in the application for research ethics review.
Research ethics committees and review bodies should be cognisant of these ethical arguments during the research ethics review of projects
Institutions must have clear policies and guidance material on data sharing.
Regulation of human epigenetic editing: ensuring international frameworks for governing Human Genome Editing don’t impede vital medical research
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.