Can reading Australian novels help us become more ethical researchers?
If someone asked you for some recommended reading or viewing to help them understand human research ethics, animal ethics or research integrity, what would you recommend?
The policies and standards issued by National governments, learned societies, funding bodies and academic publications are generally not especially engaging or entertaining.
In this blog post, Sally Dalton-Brown discusses a couple of options from the streaming and fiction publishing offerings.
They won’t exactly discuss, explain or define the principles of ethical or responsible conduct. Neither will they explain how to adhere to national requirements or instutiona policy. That isn’t surprising, but that is probably not the point. Entertainment, enjoyment and a bit of fun is a great way to engage people with the important elements of ethical and responsible behaviour in the design and conduct of research.
This material could be usefully included in the resource library for members of an institution’s research ethics committee.
The Code Breaker book review
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.
HREC decision-making about social research with children: the influence of payment, risk and method
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.
Unnatural justice: Public allegations could cause significant harm to vital clinical trial activity
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.
An ethics argument for data sharing
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…
Heeding our stories: Getting the most from a reference group in disability research
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…
Should we accept funding for facial recognition research, and other dilemmas?
Gary Allen, Mark Israel and Colin Thomson|
PEER REVIEWED
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.
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Travelling Consultants and Professional Development Roadshows
Prof. Mark Israel plans to be in CANBERRA (2-3 April), SYDNEY (8-10 May), UK and Belgium (27 May-8
Working flexibly through the Coronavirus: Continuing professional development in research integrity or human research ethics?
Research ethics and research integrity professional development works best as a long-term commitment to
When it comes to the approach to human research ethics, did we buy London Bridge thinking it was Tower Bridge?
In this post, two experienced research ethics officers risk being decried as heretics by reflecting upon the justifications that are used for the current Human Research Ethics arrangements in countries around the world.
They use the sale of London Bridge in the Sixties and the urban myth that the US millionaire who bought it thought he was buying Tower Bridge, to ask, given the time, effort and resources expended on research ethics review, are we getting what we paid for?
There are genuine benefits that can flow from a well-conducted review process and they do justify the existence of those processes, but we should stop claiming those processes safeguard us against the criminal, unethical and reckless behaviour of the past.
They don’t and we should stop claiming in our professional development activities and resource material they do.
Why do we need Category D appointments on HRECs and how should we find suitable people?
Judith C S Redman The compulsory presence of the Category D members on Australian