The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have by Bonnie Rochman (review)

Bonnie Rochman's first book, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have, is an impressive work of science journalism that provides a compelling introduction to some of the most important ethical questions raised by genetic technologies. Written for a general audience, The Gene Machine is a model for how to approach contentious ethical questions with equanimity, compassion, and, most importantly, accurate information. Rochman elucidates the facts, gives voice to the most relevant interested parties, including families and experts, and lets readers draw their own conclusions. There are multiple points of entry for interested ethicists who might want to push Rochman's discussion further, and I will discuss one such point—the ever-present shadow of eugenics—later in this review.

The Gene Machine devotes two early chapters to "older" technologies like carrier screening for lethal diseases, such as Tay-Sachs, and preimplantation genetic diagnosis (PGD) to choose a healthy embryo free of a particular genetic condition, such as a BRCA mutation. The remaining chapters delve deeply into newer technologies like noninvasive prenatal screening (NIPS), comprehensive chromosome screening (CCS) of embryos, exome and genome sequencing of individuals, CRISPR gene editing, and more. One of Rochman's strengths is her ability to present complicated science in a clear and understandable manner without losing comprehensiveness or neglecting context. She accomplishes this feat by embedding the descriptions of technologies in well-told stories, actual cases of families who have used the technologies and experienced their varied effects. In one case, for example, an infant's chromosomal microarray serendipitously uncovered an "incidental finding" unrelated to the problem that prompted the genetic test in the first place, thereby leaving the family anxious and angry about the inadequate forethought that went into preparing them for the test. In another case, exome sequencing for a toddler conclusively pinpointed a diagnosis: a rare metabolic disorder that was easily treatable, thereby saving her life. Rochman calls this latter case a "textbook example of how sequencing can revolutionize healthcare" (199).

Rochman spent years researching this book and covered a lot of ground in her investigation. Whether observing mice in a research lab, attending professional genetics conferences, interviewing researchers, practitioners, genetics counselors, or families, she drew from a multitude of sources to piece together a realistic and up-to-date picture of genetic testing. Her thoroughness and reporter's tenacity are great assets, giving readers access to the unfiltered views of people like Mark Hughes, founder of Michigan-based Genesis Genetics, who believes abstract fears about "designer babies" are irrational. According to Hughes, "No one in their right mind would go through the emotional rollercoaster, hoop-jumping of IVF for something they didn't need to do. Twentyfive years of PGD have shown that this is too complicated for people to turn to for designer baby crap" (61). As discussed in the "Playing God" chapter, most people who use PGD are motivated only to avoid bringing a child who has an elevated risk for a serious, life-threatening disease into the world.

Rochman's thorough reporting means she also raises concerns and objections when warranted. For example, she points out a potential conflict of interest for genetics counselors who, if they are employed by a private ob-gyn office, are often "salaried employees of laboratories that provide the tests used in that clinic. . ." (82). That is, declarations of a "nondirective" ethos notwithstanding, genetics counselors may be incentivized to offer and encourage genetics tests as the norm. Rochman amply demonstrates that more information is not an unalloyed good, even if it is helpful for many people much of the time. Too much information can cause needless anxiety, it can be inconclusive, misleading, or even pointless if there is no known cure, and it opens up the possibility for new ways to...