Join the Debate on Human Genome Editing!

Yeyang Su invites Impact Ethics readers to mark their calendars for the second International Summit on Human Genome Editing.

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At the end of this month, the Second International Summit on Human Genome Editing will be held in Hong Kong. In the invitation to participants, the local host and President of the Academy of Sciences of Hong Kong, Dr Lap-Chee Tsui takes care to note that: “[o]f particular concern is the possibility of heritable genome editing… and applications for purposes other than to treat disease or disability.”

The possibility of heritable human genome editing is what propelled the United States National Academy of Sciences and National Academy of Medicine, United Kingdom’s Royal Society, and the Chinese Academy of Sciences to co-organize the First International Summit on Human Gene Editing three years ago, in Washington. This Summit was a response to the first published study in human embryos using CRISPR-Cas9 – then a newly discovered genome editing tool characterized by “unprecedented efficiency and stunning ease of use.” The research led by Junjiu Huang and Canquan Zhou at Sun Yat-sen University in Guangzhou, China, aimed to modify the endogenous β-globin gene that causes β-thalassaemia. β-thalassaemia affects about 2% of people in China, with the highest prevalence in South China. It can be life-threatening, especially to children under the age of five. In later 2014 and early 2015, this study stirred much concern about “designer babies,” and discussion on the appropriate uses of human genome editing technologies.

Image credit: Genome Research Limited. Image Description: A portion of a blue DNA helix is being erased by the eraser on a pencil.

A Statement, issued at the end of the First International Summit, stipulated that “[i]t would be irresponsible to proceed any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.”

Later, in 2017, the United States National Academy of Sciences and the National Academy of Medicine issued a report on Human Genome Editing: Science, Ethics, and Governance. The authors of this report distance themselves from the Summit Statement insofar as they conclude that heritable genome editing should be permitted under uncertain circumstances.

More recently, the United Kingdom appears to have endorsed this new perspective. In July 2018, the London-based Nuffield Council on Bioethics published a report on Genome Editing and Human Reproduction: Social and Ethical Issues. The report concludes that genome editing “would not necessarily undermine the concept of human rights or the rights of the future individual concerned” provided that such experiments would not be biologically reckless, would be consistent with the welfare of future people, not socially divisive and not initiated without prior societal debate.  In a press release, this nuanced claim was shortened to “editing the DNA of a human embryo, sperm, or egg to influence the characteristics of a future person could be morally permissible,” and this is what most media subsequently reported.

The Nuffield Council Report was widely criticized, especially by some of the participants from the First International Summit. For instance, Marcy Darnovsky (who spoke at the first summit about the societal implications of emerging technologies), warned that in “a world plagued with obscene inequalities, in a time of resurgent racism,” the Nuffield Council’s report is a “brave new step” that could “harm all of us.” Paul Knoepfler, a biomedical scientist who live blogged the First International Summit on the Niche, considered the report “a mixed bag with some solid recommendations,” yet “problematic overall.”

The Working Party that authored the Nuffield Council report acknowledged that “[g]iven the present state of scientific knowledge, it is unlikely that any heritable genome editing procedure could satisfy these conditions in the near future,” and called for “broad, inclusive societal debate concerning the desirability of such interventions.”

This call for the public to join the conversation appeared in the Summit Statement published in 2015, and has since persisted. In the intervening years gene-editing technologies have rapidly evolved, and, for example, are being used to engineer “malaria-resistant” mosquitoes and develop immunotherapies. While the pace of such technological development is accelerating, the distance between now and the routine use of these technologies may be shrinking quickly. The public should have a say on this critical issue and it is now time for each one of us to join the conversation.

In the words of Wendell Wallach,

When it comes to thinking comprehensively about the brave new world we are entering, there are no experts. There are only people with somewhat more information than you…We can defer to the experts’ opinions, or as an informed public, we can take a lead in helping to set priorities.

I urge you to sign in to watch the Second International Summit and join the conversation on genome editing.

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Yeyang Su is a Ph.D. Candidate in Social Anthropology at the University of Sussex in the Centre for Bionetworking.