An argument for registers for research ethics committee members
Dr Gary Allen
September 29, 2022
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Research Ethics Monthly
ISSN 2206-2483
HREC decision-making about social research with children: the influence of payment, risk and method
April 21, 2022
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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.
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…
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…
Heeding our stories: Getting the most from a reference group in disability research
February 22, 2021
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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…
Why autism research needs more input from autistic people
April 27, 2020
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Elle Loughran Student, Trinity College Dublin Elle Loughran is a Laidlaw scholar studying genetics at Trinity College Dublin in Ireland
Inclusion of Culturally and Linguistically Diverse populations in Clinical Trials:
December 4, 2019
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Nik Zeps AHRECS Consultant Clinical trials have enormous value to society as they provide the most robust means of working
Clergy service to HRECs: the useful paradox within secular governance of research involving human participants
November 3, 2019
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Aviva Kipen, Union for Progressive Judaism and Progressive Judaism Victoria. In 2015, I earned a Doctor of Ministry Studies degree
Empowering and enabling participation in human research: Reflections from two Queenslanders living with Multiple Sclerosis
October 1, 2019
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Dr Gary Allen MS Qld Ambassador | AHRECS Senior Consultant | Member NS s4 review committee Natalie Walsh MS Qld
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