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The Nebulous Ethics of Human Germline Gene Editing

2017
Johnston J. The nebulous ethics of human germline gene editing. Hastings Bioethics Forum, January 23, 2017

Abstract

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Should scientists pursue research that would enable prospective parents to edit the genes of their future children in ways that could be passed onto subsequent generations? Not for now, according to the organizers of a summit held in Washington DC at the end of 2015. The three day International Summit on Human Gene Editing was co-hosted by the US’s National Academy of Sciences, and National Academy of Medicine, the UK’s Royal Society, and the Chinese Academy of Sciences. Its goal was to consider a variety of possible uses of gene editing technology in humans.

At the end of the Summit, the Organizing Committee endorsed some potential uses of the technology—such as to treat cancer or confer immunity to infectious diseases—if those uses could meet existing standards for safety and effectiveness. But the Committee also raised a variety of unresolved issues about the use of technologies like CRISPR-Cas9 to alter the genes of eggs, sperm or early stage embryos. In addition to questions about safety and efficacy, they listed concerns about exacerbating social inequalities and about “the moral and ethical considerations in purposefully altering human evolution.”  These concerns would persist even if researchers succeeded in developing safe, efficacious ways to alter human genes.

The idea that biomedical technologies should be tested to ensure that they work and don’t cause harm is deeply familiar to most people and requires little justification in the public square. Concerns about the potential for new technologies to exacerbate inequalities, as well as the risk that they might be applied coercively, are also familiar. But the Committee’s phrase “moral and ethical considerations” is more mysterious. What are these considerations, and what role should they play in science policy?