Risks and Rewards of Gene Editing
A DISCUSSION OF“A Viable Path Toward Responsible Use”
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In reading the interview with Jennifer Doudna (Issues, Spring 2020), I was struck by her comment regarding the importance of bioethicists in developing guidelines for the management of the CRISPR gene-editing technology. This echoed an article in the Fall 2019 issue, “Incorporating Ethics Into Technology Assessment,” by Zach Graves and Robert Cook-Deegan, which described the role of bioethicists in the assessment of new biotechnologies. For scientists, then, this appears to be the go-to approach for resolution of moral and ethical issues associated therewith, these being acknowledged to be outside the purview of science.
But it is not clear to me a priori why this is so, as there are after all many other entities in society contending for authority on such issues. Why not, for example, submit them for analysis and arbitration by, say, the Southern Baptist Theological Seminary or the Islamic Seminary of America?
Who, I wonder, are these bioethicists and how are they selected? Given the outsize roll they are being assigned, these questions merit careful consideration. I am going to surmise that they are largely drawn from the ranks of elite universities, which, as presumably with the religious institutions noted above, require vetting for intellectual orthodoxy before admission, and are grossly nonrepresentative of the demographics of the country as a whole. Are they in effect high priests of the belief system subscribed to by most scientists? That would explain the evident eagerness of scientists to invest them with ethical and moral authority.
Certainly I would encourage the bioethicists to try to use their power of moral suasion to make their case, but I would not deny this opportunity to others. In this regard, I find it disturbing that representatives of the nation’s faith communities seem to have been completely excluded from these deliberations.
There are now almost no children with Down syndrome being born in Iceland. This of course is because all fetuses identified with this condition are summarily aborted. I do not know if there is a consensus among bioethicists about the moral or ethical rectitude of this situation. But if there is, I do know that I would feel under no obligation to accept it as gospel. To my mind, any such consensus has no more legitimacy than, say, that achieved by of a group of people with Down syndrome convoked to consider the selective abortion of bioethicists.
The discoveries of Doudna and her colleagues are amazing, even awe-inspiring. They appear to confer, dare I say it, a god-like power. But I feel a deep unease at the notion that the new world built with this power will rest on moral and ethical foundations laid by bioethicists alone.
In this interview as in past public comments, Jennifer Doudna opens the door to using the CRISPR platform she helped develop in the service of a hugely controversial enterprise: altering the genomes and traits of future children and subsequent generations. She does so under the banner of responsible science and policy. But as with similar comments by supporters of heritable genome manipulations, her responses shed little light on what criteria would constitute “responsible use,” how irresponsible uses could be avoided, and how this immensely consequential decision might be made in an open and democratically responsible way.
To be sure, Doudna notes that “the main challenge in embryo editing is not scientific … but rather ethical,” and raises important questions about the feasibility of consent by future generations, the difficulty of distinguishing between medical applications and enhancements, and the harm that eradicating genetic conditions might bring to people living with those conditions. But she gives no hint about how these challenges could be met. Tellingly, she fails to mention the broader social justice alarms about heritable genome editing: that the accumulation of individual choices about the traits of future children, shaped by cultural pressures and market forces, would exacerbate existing inequalities and discrimination, introducing a new form of high-tech eugenics.
With the stakes this high, meaningful public involvement in policy decisions about heritable genome editing is critical. But Doudna’s call for “a broad public conversation” about heritable genome editing is undercut by her assertion that scientists are the parties “equipped” to “guide” the conversation. It’s difficult to avoid concluding that in this view, public participation is acceptable only at the edges and after the fact: it may nibble at questions of how heritable genome editing is to be conducted, but must refrain from considering whether it should proceed at all.
Doudna gives only the flimsiest of reasons for rejecting calls for a strong, enforceable moratorium on heritable genome editing made by many prominent scientists, biotech industry figures, policy experts, public interest advocates, and others. She voices concern about maintaining public support for using CRISPR in basic research and to treat existing patients; a moratorium on heritable genome editing would in fact strengthen public trust.
A truly responsible approach to heritable genome editing requires holding off on questions about how its development and use should proceed. Instead, we need to ensure adequate time and resources for meaningful democratic debate about whether modifying our children’s genomes will help us build a just and inclusive society.
Center for Genetics and Society