What should be done about human gene editing? Should it be used by scientists to help parents voluntarily choose to have the best possible children, leading to an all-around improvement in the gene pool? Or would such efforts render people with disabilities “unfit” for the human germline, further marginalizing the vulnerable and impoverishing our society by editing whole classes of people like them out of existence?
These and other important questions have been raised by the emergence of new technologies for manipulating human DNA, the most widely known of which is called CRISPR/Cas9. Though a handful of advocacy groups have tried to raise public awareness of the implications of gene editing, discussion of the subject has remained almost exclusively academic in recent years, even as the technologies are racing toward actual clinical applications.
The academics that have led the way in discussions of gene editing have, understandably, been the molecular biologists who are actually working on the technology, along with the bioethicists who have for decades been anticipating and talking about genetic engineering. However, in a recent op-ed in the science journal Nature, science and technology scholars Sheila Jasanoff and Benjamin Hurlbut have offered a proposal for a “global observatory for gene editing” that would help broaden the academic discussion about gene editing to include a bit more sociology. Their proposed “observatory” would facilitate an “expansive, cosmopolitan conversation” about gene editing that would go beyond judgments “of the pros and cons, risks and benefits, the permissibility or impermissibility of germline genome editing, and so on” and would address the “important background questions—who sits at the table, what questions and concerns are sidelined, and what power asymmetries are shaping the terms of debate.”
Jasanoff, a professor at Harvard and one of the most prominent academics who studies the intersection of science and politics, and Hurlbut, a professor at Arizona State whose work has focused on bioethics and politics, are rightly suspicious of the idea that scientists should have “untrammeled freedom to do anything.” But their proposal should be recognized for what it is: an attempt to shift the focus from the first-order judgments about the actual desirability of gene editing to second-order questions about who is involved in the “conversation.”
Such a change will do nothing to move debates about gene editing out of the academy and into the realm of meaningful public deliberation. The fact is, there has already been plenty of academic “conversation” about gene editing. The time has come for anyone who is worried that scientists or physicians will run amok with these technologies to pursue legislative or regulatory action. Jasanoff and Hurlbut, in their proposal for an “observatory,” do not mention the ways this hypothetical organization would exert influence on policymakers or on whose behalf. They even qualify their vague concerns about the “untrammeled freedom” of scientists by writing that they “would not seek to engage in a race against science.”
Gene editing raises serious ethical issues, and it deserves more attention from policymakers and the public. Groups that have serious concerns about how these technologies might be used—including people with disabilities, minorities, and the pro-life community—don’t need another academic forum for “conversation.” They need to organize politically to force policymakers to take the steps needed to prevent this technology from being abused.
Brendan Foht is associate editor at The New Atlantis: A Journal of Technology and Society.
