Gary Allen and Mark Israel reflect on constructive approaches to languages in human research and for research ethics committees.
Gary Allen and Mark Israel
Much human research is conducted in languages that are not the same as that used by the research ethics review body or the chief investigators. This can manifest in a number of ways including:
Recruitment and consent materials;
Data collection tools (surveys, interview instruments and observation matrices), and
return of results to participants
There is literature on the ethics of interpreting and translation (Drugan, 2017) as well as on the ethics of research in those fields (Tiselius, 2019). However, for our purposes, we want to focus on the first two situations…
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…
We note that the journal, Research Ethics, is now Open Access. https://journals.sagepub.com/description/rea
Research Ethics is aimed at all readers and authors interested in ethical issues in the conduct of research, the regulation of research, the procedures and process of ethical review as well as broader ethical issues related to research such as scientific integrity and the end uses of research. The journal aims to promote, provoke, host and engage in open and public debate about research ethics on an international scale but also to contribute to the education of researchers and reviewers of research…
All articles in Research Ethics are published as open access. There are no submission charges and no Article Processing Charges as these are fully funded by institutions through Knowledge Unlatched, resulting in no direct charge to authors.
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.
In this post, Gary, Mark and Kim refect on the draft update to Section 5 of the Australia’s National Statement.
“In recent years in Australia, we have seen some painful cases where research ethics review delegated to a non-HREC review body has failed to guard against projects that proved to be embarrassing for their host institution (see, for example, the ‘Racist bus driver’ and ‘Laughing at the disabled’ projects)….”
Dr Gary Allen It doesn’t seem so long ago that all that HRECs in Australia needed to do was consider
Lindsey Te Ata o Tu MacDonald and commentary by Mandy Downing As a member and then chair of both a
Embedding clinical research as part of routine healthcare: Managing the potential for competing interests. (UPDATED).
Nik Zeps AHRECS Consultant Clinical trials are widely accepted as the best method for understanding whether any particular medical
As both a researcher and a research administrator in healthcare, one of the more vexing issues that I have to deal with on an almost daily basis is how to manage what are termed quality assurance, quality improvement and audit activities. In its 2014 publication entitled “Ethical Considerations in Quality Assurance and Evaluation Activities”, the NHMRC (NHMRC QA guidance) suggests that these can be loosely gathered together under an umbrella term of Quality Assurance (QA) and/or evaluation. I believe this construct is wrong and reinforces a longstanding approach to ethics review that relies on the category of an investigative activity to determine the level of review that is used. This approach is problematic and leads to some significant unintended consequences.
Pieper, I. & Thomson, C.J.H. (2016) Beneficence as a Principle in Human Research. Monash
Prof Colin Thomson AM Chairing an HREC can be complicated, demanding, stressful and tiring
In a notorious scene from Pirates of the Caribbean: The Curse of the Black