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.
Samaritans UK: Developing ‘fit for purpose’ research ethics processes within a large third sector organisation
In this post, Simon Anderson (AHRECS Associate) and Liz Scowcroft (Head of Research & Evaluation, Samaritans UK) discuss the history of research ethics policy and research ethics review at Samaritans (UK).
Part of this discussion reflected on moving beyond arrangements that are very similar to those used by higher education institutions toward something better suited to the needs of the 3rd Sector.
This requires a clear understanding that the designs, outputs, objectives and needs of a significant portion of research that is conducted internally to the 3rd sector is different and needs different Solutions.
A proportional approach to research ethics review and related processes have been adopted by Samaritans, as well as widening of the definition of research and a whole of institution commitment to research ethics.
Simon and AHRECS were delighted to work with Samaritans to produce a blueprint for constructive change.
Send an email to enquiry@ahrecs.com if you would like to discuss how we could assist your institution.
Investigating an ethical barrier – should HRECs require gatekeeper approval from universities before external research?
Investigating an ethical barrier – should HRECs require gatekeeper approval from universities before external research? | In this traffic post, Kate Christian questions the elephant in the room when it comes to research about universities.
Why do ethics committees require the approval of the institution?
Especially when participants aren’t vulnerable.
Whose interests are they protecting and why?
For national research, the results can be time-consuming, frustrating and add a little to the research.
Early career researchers might meekly accept this but it sucks time, energy and resources. But research Ethics committees should ask themselves the questions: Is this efficient and is it fair? Insisting upon institutional approval may well be skewing the data and distorting the results?
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.
Expertise in ethics, research ethics or review?
In this terrific and thoughtful post, Colin Thomson AM, a Senior Adviser to AHRECS, reflects on what we mean when we talk about expertise i the context of Human Research Ethics Review.
Do we mean expertise in ethics, research ethics or ethics review or a combination?
Do they fit together seamlessly and easily or is there an incongruence?
He frames these matters, when talking about research ethics committee members and research ethics reviewers across ten important categories.
He then suggests ten tests that could be usefully applied to evaluate the quality of review feedback.
How your institution’s research ethics committee and its review feedback fare if judged against this criteria?
Is it time they had some professional development? Does the Committee’s standard operating procedures need to be updated?
This is a valuable read for research ethics committee Chairs, Secretaries and members.
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.
Why resourcing practice is a better option for institutions than policing compliance
In this post, Dr Gary Allen (one of the senior consultants at AHRECS) discusses why resourcing reflective practice is a more reliable and effective/constructive way to manage institutional risk than fixating on compliance and using an enforcement and sanctions approach.
Approaching the serious risks from within the frame of resourcing practice treats the role of research ethics as being to facilitate research, rather than being an impediment to research.
This embeds research ethics as being a component of the design and conduct of quality research, not as something external to research.
Systems that promote ethical design and conduct, are also investments in quality research
Gary has worked in the human research ethics field since 1997. He has worked with committees in Australia, Canada, New Zealand, the UK and Vietnam. He Chaired the Committee that drafted the new Chapter 3.1 of the National Statement on Ethical Conduct in Human Research.
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Making Indigenous research ethics a compulsory facet of supervisor development and student training
There is an increasing trend in Australian universities to provide professional development for supervisors
Pursuing compliance or ethical excellence?
In Australia or another country outside of Africa, would institution link to material about Ubuntu ethics? Especially if the institution isn’t doing a great deal of research in Africa.
In this post, Gary reflects on the argument that material should be included in an institution’s Human Research Ethics resource library, even if doing so, won’t be necessary to archive compliance with the national ethics guidelines/standards/regulations. In fact, he argues that precisely because it is not required, they should be included.
Gary refers to a podcast and a journal article that have recently been included in the AHRECS resource library, as examples of material that should be included in institutional resource libraries.
The point here is that material should be included if it would support excellent ethical conduct, irrespective of whether it would help demonstrate that the institution complies with the national standards – such as the National Statement in Australia.
An argument for registers for research ethics committee members
In this great and very helpful post, Gary and Kim (from AHRECS) looks at the benefits of institutions establishing and keeping updated a register of their members.
Such a register could track, when a member was appointed to the committee, when their appointment is up for renewal and the maximum finish date for their appointment. It should also track the dates on which the member has participated in professional development.
Such a register can be a component of good governance with regards to the membership of a research ethics committee.
Maintaining a register of when members have participated in professional development activities can be a great way of reinforcing the expectation that members will regularly participate in professional development. There is of course a reciprocal obligation that institutions regularly conduct internal and fund participation and external professional development activities.
It is good practice for institutions to maintain a public register of the declaration of interest from members. At the very least, such a register should be easily accessible by members of the committee, but it is also recommended that the register be publicly available. Members should be encouraged to at least lodge their interests when they are first appointed and when their membership is renewed.
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…