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.
A rose by any other name….?
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.
A poor call and two missed opportunities, but otherwise not a bad proposed revision to NS s5
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)….”
What are questionable research practices as reported by ECRs in STEMM in Australia?
Katherine Christian, Carolyn Johnstone, Jo-ann Larkins, Wendy Wright and Michael Doran Katherine Christian, Federation University Australia Carolyn Johnstone, Federation University
Why autism research needs more input from autistic people
Elle Loughran Student, Trinity College Dublin Elle Loughran is a Laidlaw scholar studying genetics at Trinity College Dublin in Ireland
COVID 19, human research and human research ethics review
Prof. Colin Thomson AM AHRECS Senior Consultant We at AHRECS, like all our friends, colleagues and clients, are becoming more
Towards a code of conduct for ethical post-disaster research
JC Gaillard School of Environment, The University of Auckland, New Zealand Unit for Environmental Sciences and Management, North-West University, South
The Ethics and Politics of Qualitative Data Sharing
Mark Israel (AHRECS and Murdoch University) and Farida Fozdar (The University of Western Australia). There is considerable momentum behind the
Vigilance versus vigilantism in science: Are ethics no longer important?
Michael James PhD, Senior Researcher, Rheumatology Unit, Royal Adelaide Hospital Les Cleland AM MBBS
A preliminary geneaology of research ethics review and Māori
Lindsey Te Ata o Tu MacDonald AHRECS, Consultant In New Zealand, we have
Do we need consent for the continued use of children’s biological samples and data in research – and what if the grown up children cannot be located?
Parental consent is sufficient to authorize research involving infants and young children who do
Tongue in Cheek
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…