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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Adopt a moratorium on heritable genome editing – Nature (Eric Lander, et al | March 2019)0

Posted by Admin in on March 15, 2019

We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children.

By ‘global moratorium’, we do not mean a permanent ban. Rather, we call for the establishment of an international framework in which nations, while retaining the right to make their own decisions, voluntarily commit to not approve any use of clinical germline editing unless certain conditions are met.

To begin with, there should be a fixed period during which no clinical uses of germline editing whatsoever are allowed. As well as allowing for discussions about the technical, scientific, medical, societal, ethical and moral issues that must be considered before germline editing is permitted, this period would provide time to establish an international framework.

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Presenting and representing others: towards an ethics of engagement (Papers: Lucy Pickering and Helen Kara | February 2017)0

Posted by Admin in on March 14, 2019

The ethics of research representation are rarely discussed. Yet representation can have a significant impact on research participants and audiences. This paper draws on some of the limited body of accounts of ethical challenges experienced in representing others in qualitative research. These accounts make clear that researchers often have to choose between ‘competing goods’ when representing others, such as participant control over what is presented and how, researchers’ ‘interpretive authority’, and whether and how to represent participants’ speech. These decisions frequently involve researchers choosing between ‘literal’ (empirical, evidence-based) and ‘real’ (authentic, experiential) truths. To resolve these dilemmas, some researchers are turning to creative methods of representation, such as poems, songs, plays and dance. Like all forms of representation, these methods require compromise: in particular, some detail, depth, or location may be sacrificed in return for accessible engagement with participants and wider audiences. Conversely, traditional methods of presentation may sacrifice some scope for engagement and accessibility in return for greater detail and depth. We argue that such sacrifices are a necessary component of all forms of qualitative representation and consequently require a reflexive approach to choices about representation. It is this reflexive approach which we argue constitutes an ethics of engagement.

Ethics, presentation, representation, reflexivity, engagement

Pickering, L., and Kara, H. (2017) Presenting and representing others: towards an ethics of engagement. International Journal of Social Research Methodology, (doi:10.1080/13645579.2017.1287875)

Why were scientists silent over gene-edited babies? – Nature (Natalie Kofler | February 2019)0

Posted by Admin in on March 12, 2019

To be successful as researchers, we must be able to think through the impacts of our work on society and speak up when necessary, says Natalie Kofler.

This story not only allows us to ponder the shocking revelations in this bewildering controversy (we’ve linked to the related items below), it’s an opportunity to reflect on Researcher Responsibility 14 in the Australian Code (2018) and the direction for researchers to take action to support a culture of responsible research in their field.

Millions were shocked to learn of the birth of gene-edited babies last year, but apparently several scientists were already in the know. Chinese researcher He Jiankui had spoken with them about his plans to genetically modify human embryos intended for pregnancy. His work was done before adequate animal studies and in direct violation of the international scientific consensus that CRISPR–Cas9 gene-editing technology is not ready or appropriate for making changes to humans that could be passed on through generations.

Scholars who have spoken publicly about their discussions with He described feeling unease. They have defended their silence by pointing to uncertainty over He’s intentions (or reassurance that he had been dissuaded), a sense of obligation to preserve confidentiality and, perhaps most consistently, the absence of a global oversight body. Others who have not come forward probably had similar rationales. But He’s experiments put human health at risk; anyone with enough knowledge and concern could have posted to blogs or reached out to their deans, the US National Institutes of Health or relevant scientific societies, such as the Association for Responsible Research and Innovation in Genome Editing (see page 440). Unfortunately, I think that few highly established scientists would have recognized an obligation to speak up.

I am convinced that this silence is a symptom of a broader scientific cultural crisis: a growing divide between the values upheld by the scientific community and the mission of science itself.

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The CRISPR-baby scandal: what’s next for human gene-editing – Nature (David Cyranoski | February 2019)0

Posted by Admin in on March 12, 2019

As concerns surge after a bombshell revelation, here are four questions about this fast-moving field.

In the three months since He Jiankui announced the birth of twin girls with edited genomes, the questions facing the scientific community have grown knottier.

By engineering mutations into human embryos, which were then used to produce babies, He leapt capriciously into an era in which science could rewrite the gene pool of future generations by altering the human germ line. He also flouted established norms for safety and human protections along the way.

There is still no definitive evidence that the biophysicist actually succeeded in modifying the girls’ genes — or those of a third child expected to be born later this year. But the experiments have attracted so much attention that the incident could alter research for years to come.

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