In this post, AHRECS senior consultant, Erich von Dietze, does a review of an incredibly interesting book by Walter Isaacson.
The book, ‘Breaking the Code’ is a very engaging discussion and introduction to genetic research and the labs that work in this field.
The book focuses upon Jennifer Doudna and her collaborators.
The writing style is punchy, direct and it provides an easily digestible introduction to genetics concepts, science and technology.
Amongst the matters discussed is the technology CRISPR.
The author is a professor of history who has written several books including contemporary histories of science and technology.
The book is a recommended read for research Ethics committee members, secretaries and research offices.
It can be especially helpful for lay and other community members, as well as for researchers outside go to outside the genetics field.
We recommend its inclusion in the resource library for your institution’s research ethics committee. It can also be the basis of professional department for committee members.
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.
In this thought-provoking post, Nik Zeps (a consultant with AHRECS and a partner at Chrysalis) discusses the serious harm (in terms of reputation and career, as well as lost useful lines of inquiry) when there are complaints that allege ethical problems with clinical research.
These relate to situations where the clinical research is evaluating different kinds of intervention, where the evidence for the ‘accepted’ treatment might not be clear.
A misunderstanding of such research designs and a visceral reaction to apparent breaches aren’t helpful.
When such allegations are made, the researchers are rarely afforded an opportunity to respond and explain. If they were, one assumes that the manner could be easily cleared up.
We are embarrassed to admit in our own reporting of the cited case we really didn’t grasp the realities of what occurred or called out the very emotive reaction.
In this post, Gary Allen and Nik Zeps explore the human research ethics arguments and imperatives that only allow for the sharing of data, but establish a public good that can make sharing expected and essential.
This expectation should shape the approach to consent, the framing of assurances given to potential participants about confidentiality and e reflected in the application for research ethics review.
Research ethics committees and review bodies should be cognisant of these ethical arguments during the research ethics review of projects
Institutions must have clear policies and guidance material on data sharing.
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…
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…
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.
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.
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.
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…
For anyone that has been paying even the slightest attention to scholarly publishing over
It is with great sorrow that we note the passing of one of our