What next for human germline editing?

The issues are somewhat clearly identified. The lack of concrete proposals is deafening.

 

Yesterday I attended an event at Harvard, “Editorial Humility: A Moratorium on Human Germline Editing?”, sparked by the recently published call for a moratorium on human germline editing that Eric Lander co-authored with 17 others.

Back in 2015 there was a clear call for a moratorium, with a focus on whether this is a road we want to go down at all. In 2017, the National Academies of Science and Medicine published a report that watered down this call, focusing on questions of safety and efficacy (I argued at the time against this watering down). He Jiankui pointed to this NASAM report in claiming that there was no clear writ against his decision to pursue the human germline editing that lead to the birth of Lulu and Nana. In other words, the absence of a clearly called for moratorium likely had a role in the actual use of the technology.

Is a moratorium the right approach? Eric Lander, speaking first, explained that the main aim of the new call was to seed the debate. He is backed by the NIH, represented at the event by Carrie Wolinetz. In the US there is a ban against germline editing already in place, but the world’s largest funder of biomedical research nonetheless thought using their “bully pulpit” position in support of a moratorium was the right thing to do.

A moratorium is a lightweight solution. It would be time limited from the get go. And it would leave eventual decisions with each sovereign power on a country by country basis. For panellists Betsy Bartholet and Sheila Jasanoff, this does not go far enough, and we should be aspiring to an International Treaty. Betsy Bartholet called on Eric Lander and the concerned scientific community to start the work to get a treaty in place. Eric Lander called on Bartholet and the lawyers to instead do this work. Both claimed a lack of expertise. This was concerning. An example of how things can truly fall between the cracks.

Playing devil’s advocate, I Glenn Cohen argued that moratoriums can be “sticky”, even if they have a sunset clause. Moreover, bioethicists have been talking about this for years; we’ve done all the thinking we need to. He also argued that we need to de-exceptionalize genetic modification as a technology. Many technologies, e.g. smartphones, have disturbing ethical implications. I agree with Lander’s response that Yes, we have issues across the board when it comes to new technologies, but that’s a reason to engage with all of them, not to disengage with this one.

Steve Hyman, ex-provost of Harvard, said that he was much more concerned about the use of cognitive polygenic scores for selecting embryos. Given my research interests, no surprise that I strongly agree. I’ve also published (joint with Sarah Polcz) that although scientists are making a big distinction between heritable/non-heritable, I think the bigger distinction is therapy/enhancement.  

I took two main things away from the panel.

First, everybody was horrified that the scientific community so thoroughly dropped the ball. Many others knew what He Jiankui was up to, and no-one raised the alarm. (Note that the scientific community is divided about whether blame should fall entirely on He or not.) What should be done? Eric Lander made the case that you can’t expect scientists to self-regulate because they have an inherent conflict of interest. When you work on anything you have to be the biggest believers in the upsides, the optimists. Jasanoff reminded Lander that the metro between Harvard and Kendall “runs both ways”, and that he should come to the Kennedy School more often to explore the issues from a different point of view. The question of the role of scientists seems prescient in light of the debate over the extent to which the social media giants can and should self-regulate. In this arena, bioethicists are given heat for being too conservative, for overplaying the risks of a technology and failing to see the potential benefits. So what is the right balance of roles?   

Second, as ever, there were broad calls for public debate. But when it came to concrete proposals for “deliberative explorations”, nothing. There was reference to learning about how other countries have done this. The UK is always held up as the shining example. (And the inevitable “How do they manage to achieve consensus on the use of reproductive technologies, but end up in such a mess over Brexit?”). I’ve added to my To Do list a comparative approach to the various approaches to public engagement taken around the world with respect to mitochondrial replacement therapy. Approaches that have caught my eye include the Moral Machines work, where the public were invited to state who they thought a self-driving car could kill. And something like what the folks at World Wide Views are up to. I’m very interested to hear of deliberation and public engagement that others are enthusiastic about.

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