Ethics Committees and Research Data Management
Human research projects often raise complex Data Management issues and considerations that can be pertinent for consent, privacy, risk management and research ethics review.
Research data is also an important element of research integrity, in that it serves as a record of the way in which the research project was conducted and the results of the work.
The data of the project could be useful and valuable for researchers conducting wider work in the same area. There are strong ethical reasons for the data to be in a form useful for sharing and the consent obtained allow for that sharing.
The responsible approach to that data should be informed by a mixture of institutional policy, the law /regulation and methodological standards.
In this post, Nichola Burton, Program Manager (Institutional Underpinnings), ARDC reflects on the issues confronting Australia Human Research Ethic Committees and their host institution.
Effective use of research management systems
In this post, Michael Creevey (the CEO of Endpoint IQ) discusses the effective and constructive use of research management systems, including research ethics modules.
He discusses how a system can be used to resource and support a positive research culture within an institution.
Effective systems should provide the tools so users and their stakeholders can operate a constructive and value adding set of research governance arrangements (including Human Research Ethics, Animal Ethics and the related processes).
Michael discusses the origins of Endpoint IQ and how it was informed by the perspectives, needs and aspirations of research managers and researchers in Australia.
AHRECS is very conscious of the degree to which we have a conflict of interest in this space, but we think the Endpoint IQ system is excellent and is worth a serious look. We have an ongoing good relationship with Michael and the Endpoint IQ team, we have also partnered with them in bids in New Zealand. We also have a small financial connection to them. This conflict notwithstanding, we encourage research institutions to have a serious look at this system.
Even though Endpoint IQ is an excellent system, there are a number of other research management systems that are commendable and can perform similar (but not identical) functions to those of Endpoint IQ.
HREC decision-making about social research with children: the influence of payment, risk and method
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.
National Human Research Ethics Conference – an administrator’s perspective
In this terrific post, Sara Gottliebsen reflects on the last few years’ experiences in organising the incredibly popular annual human research ethics webinar.
This free event was first conceived of by Gorden McGurk, who has organised the webinars over the last few years.
The Human Research Ethics conferences have established a very high standard for the design, execution, speakers and contents for such an event.
The event received very high praise and deserved to get it.
The itinerary of speakers, events and activities for a free event is simply remarkable and deserving of the highest praise.
Well done Gordon, Sara and the team.
AHRECS is proud to be one of the inaugural sponsors of this event and will be continuing our sponsorship in 2022.
The challenge of being ‘fit for purpose’
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.
Adele’s Adventures in Wonderland*: Reflections on a 12-year journey in ethics, research integrity and so much more
In this post, inspired by Lewis Carol’s book, ‘Alice in Wonderland’ Adele Kay reflects on the wild and wacky (and sometimes surreal) experiences she had in a great career in the human research ethics, research integrity, animal, etc spaces.
She generously shares observations, tips and suggestions how to navigate this space with good humour.
Part of this is reading, interpreting and explaining national frameworks to executive and other senior staff.
She reflects upon useful skills, experience, training and education.
Working for constructive change on these matters from within an institution can sometimes be frustrating and feel a little wacky. Often AHRECS has been brought in to provide an independent and expert opinion on what internal staff have been saying for some time.
We suspect her commentary and experiences will both ring true for experienced practitioners and offer helpful tips.
We greatly enjoyed this post and we hope you will too.
What do HREC members think and do when deciding about children’s participation in social research? Results from the MESSI survey
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.
Research ethics reviews: responding to the challenges faced by international postgraduate students
In this great post, Mark Israel, Julia Miller, Liwen Tan and Kristy Davis discuss the extra challenges that confront international students when it comes to human research ethics and navigating research ethics review and the daunting challenge of satisfying an unsympathetic research ethics committee.
This scary rite of passage is made even harder if your native language doesn’t have direct translations for ethics terminology or if there are cultural concepts without direct correlation.
This is a matter that should be carefully considered by research ethics committees, research offices, international offices and graduate schools.
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