Steven Pinker’s recent piece extolling the benefits of CRISPR-centered biomedical research, and decrying the bioethicists who are supposedly in the way, has been widely dissected and debunked. Many objected to Pinker’s inflammatory tone, but that tone was part of a larger rhetorical strategy, one which should be of interest to those of us concerned about cutting-edge biotech and human futures.
As a tenured academic dismissing an entire academic field, Pinker resembles a politician who, in a bid for status within a system, pretends to be outside it. It’s a maverick’s pose: say things shocking enough to go viral, but not shocking enough to disqualify. Like other faux outsiders, Pinker takes a simple approach: sketch a simple, moral narrative, with an obvious problem and an obvious solution; populate it with good guys (researchers who heal) and bad (bioethicists who obstruct); and inject a crude emotional appeal (do you really want your loved ones to die early?). The Internet, duly infected and feverish, keeps you in the news, and the outrage only confirms your outsider status.
In Pinker’s narrative, disability (not distinguished from suffering or disease) is the problem, and biotechnology is the solution. If disability were purely physical, this approach might hold. But if, as scholars in disability studies generally assert, disability is produced by impairment in context, then a technological fix is by definition insufficient; and if disability is not equivalent to suffering, then the get-out-of-the-way approach may not be warranted. Before we charge ahead with fixing something, we need to ask what counts as broken. This does not mean we should not aggressively pursue treatments, or cures, for pancreatic cancer. It does mean that the details matter, and that lumping in cancer, Down syndrome, deafness, and bipolar disorder (for example) into a disability-adjusted global burden of disease, as Pinker does, may not square with the actual experience of human beings.
Pinker’s op-ed presents an extreme case of a pattern familiar from other debates: a frightening or primarily negative view of disability is paired with an overly optimistic view of technology. If disability is scary, then the technology—even, or especially, when it seems extreme—looks more appealing. This pattern is also visible in arguments about “mitochondrial transfer” and advertising for prenatal tests for Down syndrome: unintended consequences are dismissed and great benefits are promised. As a corollary, questions about new technologies are dismissed as emotional—even as an emotional appeal is made for their promises.
These distortions do not serve good policy outcomes. Science is part of society, and in a genuine democracy we would not rush ahead, cowed by promises of cures: we would deliberate. We would distinguish between science and salesmanship, between promising research and patent hopes. We would approach powerful technologies in the spirit of the best science—that is, with a radical uncertainty about their (intentional and unintentional) results, with an acknowledgment that we do not actually know which cures will come, or when, or how, and with an understanding that science is, to paraphrase Jonathan Marks, only one way of knowing things. We would ask whether an ethos that paints disability with such a broad brush can hope to truly serve a democracy where disability is a part of life. And in discussions of emerging technological promises, people with disabilities would serve not as object lessons in suffering, but as participants, as voices to be heard.
George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.
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Image via DemonFreeze
Posted in Bioethics, Disability, Genetic Selection, Inheritable Genetic Modification, Medical Gene Transfer, Synthetic Biology
CommentsAdd a Comment
Comment by eresting, Nov 29th, 2016 12:43am
These are matters that some pro-choice progressives.
Comment by Susan Cumings, Nov 11th, 2016 3:30am
Excellent analysis. Words matter. The experiences of those who have the (disability or condition or disease) matter.
Comment by BK, Jan 2nd, 2016 7:42pm
Wow. This would be like me trying to tell Stephen Hawking that he's full of it, while waving around a degree in interpretive dance.
This article is pure garbage.
Comment by Ken Trough, Jan 2nd, 2016 10:29am
Please explain why we should accept that you, as a poet, know more about the realities of genetic modification than a Harvard neuropsychologist?
I generally don't go to a gymnast to get analysis on the theory of the internal combustion engine, for instance.