International uproar followed the announcement in late 2018 of the birth of twin girls whose genomes had been edited with CRISPR genome editing technology. Critics pointed not only to the health risks of the experiment, calling it “reckless,” but to the fact that the lead researcher had proceeded with germline editing in advance of a sought-after international consensus on its permissibility. Since then, He Jiankui and two of his collaborators have been fined and sentenced to prison, yet the international governance conversation seems to have moved from seeking consensus on difficult moral and ethical questions to accepting that different countries will approach this technology differently—and developing guidelines for those that decide to move germline editing forward. From this, one might conclude that CRISPR is less a challenge to our shared humanity than a powerful technology to be expertly shepherded into the clinic.
What role should ELSI research play in this rapidly developing space? Which questions should we be grappling with, and to what ends? Ought we continue to question whether germline modification represents a line that should not be crossed, or whether CRISPR raises unique or technology-specific moral questions and tensions? Should we instead use developments in genome editing as an opportunity to interrogate unjust and unequal systems within which this technology will operate? Or should we focus on ensuring that studies are ethically designed and conducted? What does good governance mean in this context and how can ELSI scholars work to advance it? This panel features a range of perspectives on genome editing and asks how the ELSI community can play a productive—and perhaps provocative—role, in its development going forward.
Speakers: Rosemarie Garland-Thomson, PhD; George Daley, MD; Bartha Knoppers, PhD
Moderator: Josephine Johnston, LLB, MBHL