American Scientist

FABLES AND FUTURES: Biotechnology, Disability, and the Stories We Tell Ourselves. George Estreich. 219 pp. The MIT Press, 2019. $27.95.

Full disclosure: George Estreich and I are twins. Not biological twins, of course—his mother was Japanese, his father Jewish; my mother was Irish, my father is French Canadian. But then, how thoroughly does biology explain who we are, anyway? There are far more important similarities at work: We are both fathers of children with Down syndrome; we are both English professors; we are both authors of books about our children; and crucially, we are both authors of “memoirs” that are not really memoirs so much as explorations of the history of intellectual disability and the state of the world our children are growing up in. Estreich kindly provided my second book about my son Jamie, Life as Jamie Knows It, with a very generous blurb. So you can imagine that I would read his new book—Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves—uncritically: George Estreich, mon semblable, mon frère.

But you don’t have to worry about that, because Fables and Futures isn’t written for me. It’s written for everyone who’s interested in what genome editing might mean for the future of our species, and/or anyone who wonders whether first-trimester prenatal screening will lead us to a happy place free of people with genetic anomalies. For the record, Estreich and I have no problem with screening for conditions such as Tay-Sachs; we just think there’s nothing to be gained by trying to rid the world of people with Down syndrome, and we have a lively sense (livelier, I suspect, than that of many advocates of genetic editing and enhancement) that there will always be forms of intraspecies difference for which we cannot edit or screen. Like, say, autism.

Fables and Futures is very much a writer’s book, mind you. Estreich is a rather craftier writer than I am (he’s a poet, I’m strictly nonfiction), and he will take you on journeys you might at first consider tangents from the main point, into comedians’ jokes about intellectual disability or a savvy reading of the 2012 film The Amazing Spider-Man. But precisely because he is so crafty a writer, he is an exacting reader—not only of the subtly manipulative and intellectually corner-cutting promotional materials for noninvasive prenatal screening, but also of the relentless and stunningly imprecise way in which scientists, medical professionals, and public officials equate disability with disease. When controversy arose over a donor being rejected by the London Sperm Bank, Vanessa Smith, a “quality manager” at the bank’s parent organization, said, “We are looking for someone who is medically clear of infectious diseases and genetic issues that may possibly be passed on to any resulting child.” Estreich’s response: “Infectious diseases is specific, but genetic issues less so; the euphemistic vagueness of ‘issues’ enables a double emphasis on pathology and genes, even when neither is fully appropriate. Autism is not a disease. Neither is dyslexia.” And yes, the London Sperm Bank had rejected a donor for having dyslexia. Because of course no rational person would want to take a chance on having a child with dsylexia.

Estreich and I believe that a world that tried to eradicate disability altogether would indeed be a science-fiction dystopia. Another world is possible­—one in which we decide to include rather than to eliminate people with disabilities.

• Facebook
• Twitter

To take a more pervasive and problematic example: Estreich comments on the elision of disease and disability by biochemist Jennifer Doudna as she advocates for the CRISPR-Cas9 system of gene editing that she codeveloped. He considers questionable her use of Huntington’s disease “[to anchor] a broader argument for gene-editing in which a wide range of conditions are classed as abnormal, . . . where lists of conditions potentially curable by CRISPR include everything from Tay-Sachs to deafness.” As he notes, “There’s an unresolved tension between using the worst cases (like Huntington’s disease) to boost the case for using CRISPR, and using long lists of milder conditions to widen our sense of CRISPR’s scope.”

Along the way, Estreich rehearses some of the history of eugenics—which, in my experience, inevitably produces an aggressive defensiveness among the people proposing genetic interventions and even modifications of the germ line: That was then! Those people had bad science and did not fully understand heritability. Things are different now! (I always imagine this rebuttal in the voice of the King of Swamp Castle in Monty Python and the Holy Grail: “Please, please! This is supposed to be a happy occasion! Let’s not bicker and argue about ’oo killed ’oo.”) Eugenics is the issue that most starkly divides scientists and humanists on the question of potential human modification. Scientists argue (quite plausibly) that CRISPR, three-person in vitro fertilization, and nuclear genome transfer (a controversial technique involving donation of mitochondrial DNA) have nothing to do with the fantasies of eugenicists such as Francis Galton and Charles Davenport about improving the human stock; and they insist that humanists just don’t understand the science. Humanists respond that even though no state coercion is entailed when prospective parents are persuaded to select against potentially debilitating or stigmatized conditions, the value of the lives of people with disabilities is still being set at an unjustifiably steep discount; and they insist that the scientists just don’t understand the history.

Estreich’s book will, I hope, help to move us past this impasse. But when one considers—to take one of Estreich’s examples—the 2015 Boston Globe op-ed in defense of CRISPR-Cas9 in which Steven Pinker tells bioethicists (with his customary nuance and tact) to “get out of the way,” it is clear that we have many mountains to move—not only because Pinker was clearly thinking of bioethicists like Leon Kass (who was largely responsible for the moratorium on stem cell research in the United States) and not of those like the Oxford brain trust of Julian Savulescu and Nick Bostrom (who insist that it is a moral imperative for people to let a thousand genetic enhancements bloom), but also because the overselling of genetic “breakthroughs” is less often the work of popular-science journalists than of the scientists themselves. “The opposition between reasonable scientists and fearful publics is ubiquitous in popular writing about biotechnology,” Estreich notes. But he also reveals, by way of the dying art of close reading, that some of the sloppiest, most starry-eyed accounts of the promises of biotechnology have come from people like scientist and entrepreneur Craig Venter, Harvard biologist George Church (author of Regenesis: How Synthetic Biology Will Reinvent Nature and Ourselves), and biologist Beth Shapiro (author of How to Clone a Mammoth).

Estreich and I love our kids. On a daily basis, we marvel at how irreplaceable they are, how much they enjoy their lives, how much they have enriched our lives and our understanding of human life. We don’t oppose screening for Down syndrome, and we don’t believe in compulsory birth under any circumstances; we just want people in the life sciences, the people driving the technologies of screening and enhancement, to have a less blinkered view of disability. I’ll leave the last word not to Estreich but to genetic counselor Robert Resta, with whom I share no literal or literary DNA. In his essay on why 35 was chosen as the age at which pregnant women should be advised to undergo amniocentesis, Resta deftly deconstructs the cost/benefit analysis underlying the decision:

All of the studies compared the cost of amniocentesis with the current medical, custodial and educational costs of caring for individuals with Down syndrome. No study compared the cost of amniocentesis to the cost of developing better programs to improve the medical care, economic opportunities, and education of people with Down syndrome.

Again, Estreich and I are not Luddites; on the contrary, we know that without the medical advances of the 20th century, neither his daughter Laura nor my son Jamie would be alive. But we believe that a world that tried to eradicate disability altogether would indeed be a science-fiction dystopia. And we believe that another world is possible—one in which we decide to include rather than to eliminate people with disabilities.