Regulation of human epigenetic editing: ensuring international frameworks for governing Human Genome Editing don’t impede vital medical research
In this thoughtful post, Nik Zeps reflects on human genome manipulation in medical research, the ethical guidance in Australia and internationally.
He discusses CRISPR and the furore in 2018 around the ‘genetically modified babies’ in China.
Nik then discusses the degree to which the COVID-19 pandemic has pushed discussions about human genetic manipulation off the media radar.
Nevertheless, there have been important international discussions about the topic, including a new WHO Framework. This topic was recently discussed in a paper by Zeps, Lysaght et al. 2021.
The situation might position the WHO as a major player in the international discussion about human genetic manipulation.
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…
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…
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 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.
Let’s imagine for a moment that you are a mid-career university researcher with growing
One of our consultants (Dr Lindsey Te Ata o Tu MacDonald) recently facilitated a
Professor Jennifer Byrne | University of Sydney Medical School and Children’s Hospital at Westmead
We are currently expecting the new service to go live prior to us sending