Heredity and Hope: The Case for Genetic Screening (review)

Heredity and Hope is an unapologetic polemic against the critics of genetic screening and a must-read for anyone interested in the past and future of genetic medicine. Ruth Schwartz Cowan has crafted a book that uses “historians’ tools” to do the “bioethical work” of buttressing what she describes as the “pronatal” and “anti-eugenic” enterprise of medical genetics (p. 226). Her work is an argument against our acculturated ambivalence about genetic technologies and a defense of medical geneticists and genetic counselors who “are pursuing an ethical vision in their careers, opening up new, moral opportunities for their patients” (p. 245). Cowan advocates for the consumers of genetic screening—even where testing is mandated by communal or government sanction. She boldly champions pronatalist medical practices unburdened by their alleged eugenic past or a universal requirement of informed consent or right of free refusal.

There is a glaring absence of well-written histories that detail the evolution of genetic medicine, and Cowan’s work is welcome in that regard. The narrative begins with two measured chapters on the history of the global eugenics movement (ca. 1880–1940) followed by a history of the rise of genetics and medical genetics (ca. 1900–50). Her appraisal is that anyone who thinks that medical genetics was born out of eugenics is simply wrong about the facts. The connections are tenuous, she argues; and those who insist on making them are committing a “genealogical fallacy,” since the pioneers of medical genetics were not motivated by eugenic efforts to rid human populations of the “unfit” (p. 67). Her argument takes full flight where Cowan uses her considerable expertise as a historian of technology to show that genetic tests—namely, amniocentesis, ultrasound, and chorionic villus sampling—are part of a technological system that owes nothing in its social origins to eugenics. Cowan then turns to newborn genetic screening for phenylketonuria and adult carrier screening for Tay-Sachs disease, explaining that successful efforts to reduce the prevalence of these disorders met surprisingly little resistance because they originated within the communities at risk. In counterpoint, she details how sickle cell anemia screening failed because of its resonance among African Americans as a stigmatizing and “genocidal” practice foisted on them (pp. 167–80). Finally, Cowan ends with a fine-grained tale about universal β-thalassemia carrier screening in the Greek and Turkish republics of Cypress. Here, every sector of Cypriot society allegedly learned to embrace the mandate as a righteous course of action, one that served the original ideal behind eugenics—“beautiful heredity”—without actually being “eugenic” (p. 222).

Cowan explains her motives and methods in the book’s opening and conclusion. She also identifies her targets—the “left-wing intellectuals,” “reproductive feminists,” “disability rights activists,” and “adamant pro-lifers” who refuse to endorse genetic screening—as well as those who use genetic testing but are ambivalent about doing so (pp. 7, 227–34). Cowan was once ambivalent herself, but she deftly explains how historical re-education taught her how to stop worrying about genetic screening and learn, like her Cypriots, to embrace it.

Heredity and Hope has the potential to engage diverse audiences but is marred by its selective account of eugenics and genetic screening. Cowan has a very restrictive definition of eugenics and completely ignores pertinent historiography that shows that the eugenics movement was thoroughly pronatalist in its promotion of “better breeding.” Her case study of Tay-Sachs wrongly suggests that carrier screening within Jewish communities has escaped controversy, and she focuses entirely on a few single gene defects that are fast becoming the exception rather than the rule. Cowan’s rationale for such selectivity is missing, and readers are left to wonder whether her arguments could withstand the inclusion of more challenging examples—for instance, Gaucher’s, Huntington’s, Alzheimer’s, or cancer. This book may prove useful to boosters of genetic screening, but its origin stories and arguments seem unlikely to convert.