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Does the rhetoric of consumer genetics aim to eliminate disability without mentioning it?

Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves

George Estreich
MIT Press
2019
237 pp.
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In 2011, poet and writer George Estreich wrote about the impact of biotechnology on family life in his first book, The Shape of the Eye. The memoir centers on how his family’s life was changed, and enriched, by the birth of his second child, Laura, who has Down syndrome.

Laura made his second book possible. In Fables and Futures, Estreich goes beyond the personal to describe the ways that genetic technologies affect society and the stories the promoters of such technologies tell about them. These “fables” affect not only how we view new technologies but also how we view normality and the rights and welfare of humans whom we have labeled as having various “disabilities.”

The stories we tend to hear about genomics, often little more than commercially sponsored visions of the future, are almost always about progress and happiness. According to Estreich, those who display any ambivalence about new genetic technologies risk being labeled “fearful, uninformed, paranoid, Luddite, vociferous, loud, anti-science, anti-technology,” a literary tactic “being used to heighten the authority of science.” Our silent and unquestioning embrace of new genetic technologies, he maintains, adopts a neo-eugenic perspective on life that in its reductionist and deterministic credo states that only genes, not environment or epigenetic factors, matter to define a person’s health or “disability.”

Estreich covers technologies from CRISPR to de-extinction and from synthetic biology to mitochondrial disorders. He seems most comfortable, however, critiquing the stories we tell about a technology that arrived long after the birth of his daughter Laura: noninvasive prenatal screening (NIPS), a screening test for trisomies 21 (Down syndrome), 18, and 13. NIPS can detect trisomies from placental or fetal DNA isolated from a maternal blood sample taken from a pregnant woman at about 10 weeks. It is now routinely available.

Unlike most other medical tests, NIPS is sold directly to pregnant women by means of high-production video advertisements made by the for-profit companies that sell the test. These ads all tell the same basic story: “the good life, made possible by technology” as depicted by idealized images of a suburban family with a “chromosomally typical child cavorting in the meadow.”

People with Down syndrome are not seen in such stories and “exist only as blurry, medicalized abstractions.” The message is that there is no actual decision to make here—have the blood test and be reassured. Marketing persuasion takes the place of informed consent.

Estreich tells the story of a pregnant couple who are persuaded to discuss the results of their Down syndrome test on the Today show. After the revelation of the test results (negative), the child’s gender is revealed to them (and the audience) by the pregnant woman opening a wrapped box with the results inside.

As Estreich suggests, this is reality TV, and reality TV “from Survivor to The Bachelor … depends on contrived ritual.” He argues that such stunts brilliantly normalize prenatal testing: transforming the uterus into a box, and the now gendered child into a gift, novel technology simultaneously brought down to the familiar.

Estreich mentions human genome editing to produce “better babies” only in passing, but the stories and themes he exposes as driving forces behind other genetic technologies found expression at the November 2018 Second International Summit on Human Gene Editing in Hong Kong. There, a Chinese biophysicist named He Jiankui was invited to “reveal” the first-in-the-world “CRISPR baby” (actually twin girls) to a hushed and credulous scientific audience.

The technology was introduced as a new but simple assisted reproductive technique that was justified by the desperate desire of a couple to have a genetically related child. The couple in question was fearful that without using the new technology, their child would be born with a disability: not Down syndrome, but HIV. The marketing was handled by the experiment’s fiscal sponsor, a for-profit biotech company. The scientific audience seemed to be enchanted with this almost anti-science, and certainly anti–human rights, display. As for members of the disability community, they were neither seen nor heard.

I recommend Fables and Futures to anyone who wants to seriously engage in the human genome editing debate at the society and species levels. But I also recommend Estreich’s earlier book, The Shape of the Eye, lest in our abstraction of the human species, we forget what life itself is
all about.

About the author

The reviewer is director of the Center for Health Law, Ethics, and Human Rights, Boston University School of Public Health, Boston, MA 02118, USA.