Farida Fozdar responds and reflects upon the February 2021 post by Gary Allen and Mark Israel.
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…
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…
Elle Loughran Student, Trinity College Dublin Elle Loughran is a Laidlaw scholar studying genetics at Trinity College Dublin in Ireland
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
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
Dr Gary Allen MS Qld Ambassador | AHRECS Senior Consultant | Member NS s4 review committee Natalie Walsh MS Qld
We respect you… we just don’t need to hear from you anymore: Should the consumer and their community participate in research as partners instead of just being subjects?
By Dr Gary Allen| Senior Policy Officer, Office for Research Griffith University | Ambassador Council the Hopkins Centre| Ambassador MS
Judith C S Redman The compulsory presence of the Category D members on Australian Human Research Ethics Committees (HRECs) can
AHRECS has always had two primary missions: to provide relevant and up-to-date information services
In this post, Dr Gary Allen reflects on the establishment and conduct of constructive audits.
Dr Gary Allen
When research with current ethics approval is periodically monitored, it is typically a passive process. Institutions, often via their research ethics administration, will ask researchers to self-report on the continued ethical acceptability of a project (and compliance with any conditions of approval). It would not be unreasonable to conclude that self-reporting is not the most effective way to identify if there have been problems with approved projects. Indeed, if things have gone wrong, it is at least possible that the most troublesome researchers might not be entirely honest about what has happened or why.
So, what is the alternative?
Conducting random audits of a small number of active projects…
Professor Jennifer Byrne | University of Sydney Medical School and Children’s Hospital at Westmead
In response to community feedback, from 1 November 2020, only papers, books and genuine resources will be posted to the AHRECS Resource Library; news and announcements will be posted to the feeds page. Searches of the site can include searches of the feed. Links to Research Ethics Monthly editions will also be posted to the feeds page. Please bear with us as we move all existing news items over to the feed. Eventually, this approach will make it easier to distinguish between research outputs and news items about human research ethics and research integrity.