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Baylor, Arizona State University Nab $1.6M NIH Grant to Develop Genome Editing Governance

NEW YORK – Baylor College of Medicine and Arizona State University said today that they have received a $1.6 million grant from the National Institutes of Health to evaluate recent developments in human genome editing, analyze responses of the public and scientific communities to the technology, and  develop recommendations for how to responsibly govern the technology and its use in research in the future.

Although genome editing could provide insights into reproduction, contraception, and fertility treatments, and editing the human germline could prevent genetic disease in future children, the rapid pace of human gene editing science has raised significant ethical, legal, and social challenges, Baylor and ASU wrote in their grant proposal.

The long-term goal of their research, they added, is to develop a robust and scalable model of anticipatory governance for human genome editing technologies that incorporates public values. The researchers plan to speak to experts and members of the public to identify the most urgent ethical, social, and political dilemmas that could emerge from genome editing. They will then evaluate existing governance structures, identify blind spots, and produce a set of proposed policy responses.

"This project would be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of genome editing technologies," they wrote. "It will be the first end-to-end application of anticipatory governance in the life sciences, where robust public engagement is bookended by expert stakeholder deliberations. If genome editing is eventually considered safe and effective, the time for constructing frameworks of anticipatory policymaking is now, not after the technologies have already emerged."

Baylor will contribute its expertise in bioethics, science policy, and the study of the implications of emerging technologies and clinical research. ASU, meanwhile, will add its expertise in foresight, public engagement, and participatory governance.

"Clinical applications of human genome editing should not proceed without increased public input and awareness," Christopher Scott, the Dalton Tomlin Chair of Medical Ethics and Health Policy at the Center for Medical Ethics and Health Policy at Baylor, said in a statement. "This has been a long-understood consensus among ethics and science policy scholars, yet little has been done to address it, until now. We are taking the first steps necessary to study this process."

Scott cited the controversial work of He Jiankui as one impetus for this grant.

"The China CRISPR baby case showed us that there is a pressing need for public engagement in partnership with expert policymaking. The scientific community was clearly alarmed, and the public was distressed that this research was happening without regulations or oversight and a clear path," he said.

Incorporating views from the public, as well as scientists, ethicists, and policymakers, on the governance of genome editing technology and research will better prepare society for situations like the controversy in China, Baylor added.