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ResourcesHuman Research EthicsWhy were scientists silent over gene-edited babies? – Nature (Natalie Kofler | February 2019)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

 


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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.
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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.
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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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Read the rest of this discussion piece



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