In chapter 4 of her debut book, “Second Life: Having a Child in the Digital Age,” the journalist and critic-at-large Amanda Hess characterizes her NIPT results call as an animating force. The genetic screening imbues her growing fetus with a sex, an aspect of his personhood previously unknowable to her. She writes, “I knew what it felt like, then, to take a genetic signal, arouse it into a spectacle and watch it tear through my life. There is no such thing as neutral information.” Second Life chronicles Hess’s pregnancy and postpartum experience, including her son’s prenatal diagnosis of Beckwith-Wiedemann syndrome, through the lens of various technologies: genetic tests, ultrasounds, period and sleep-tracking apps, apnea machine, and robotic auto-rocking cribs, among many others. The book interrogates what it means for health, pregnancy and motherhood to be mediated in this way. For Hess, the data intended to offer a simple maternal road map often leaves her confused and conflicted. 

I picked up this book because I was curious about the role of all these emerging technologies, and I left with a more robust, patient-centered philosophy of genetic testing and counseling. Second Life charges its readers, especially genetic counselors and other clinicians, to reflect on genetic testing not just as a technology but a medium that significantly influences the patient experience.

Hess views genetic testing as one component of her pregnancy’s medicalization, the social and institutional lenses that reconstitute human conditions as medical problems. Within this framework, having a child, even under ideal circumstances, represents a medical problem that demands regular surveillance via bloodwork and imaging. Should any screenings return abnormal, as they did for Hess, providers will require a battery of additional tests. Undeniably, the medicalization of pregnancy has reduced maternal and infant mortality, improved birth outcomes and allowed patients to make informed reproductive choices.

In other chapters, Hess criticizes an opposing viewpoint to medicalization, which suggests that pregnancy and motherhood belong to the realm of the natural, the instinctual and that seeking medical attention connotes a failure of the prescribed role of expectant mother. However, just because medicalization has many concrete benefits does not mean its faults — particularly in relation to stigmatizing disability, lacking emotional warmth and alarming patients — should not be scrutinized. As genetic counselors, we should think critically about critiques like Hess’s of the broader medical models in which we operate.

Throughout Second Life, Hess contrasts the sterile clinical vocabulary of her doctors and test reports with the messy biological realities of her pregnancy. Following the abnormal ultrasound that first raised suspicion for Beckwith-Wiedemann syndrome, she describes her subsequent genetic counseling appointment as judgmental and cold. In her view, the genetic counselor was seeking to “extract information about the mistakes I made.” When Hess asked for a list of conditions included on the prenatal microarray and whole exome sequencing that was offered, her genetic counselor replied that there were too many disorders than could be captured in one document.

Although we GCs may interpret this as a routine interaction, Hess felt a profound sense of alienation in that moment, as though her providers were gatekeepers of knowledge about her son that she, the patient, could never grasp. After she declines prenatal WES despite heavy pressure from her obstetrician, she again highlights the fundamental friction between patient and provider, acknowledging, “He had done nothing wrong, only his job. Really he had done a wonderful job. But his job was to look at my son and see things he did not like, and for that reason I never wanted to see him again.” All these conversations imply to the author that there is only one “correct” way of knowing her child: with medical tests and diagnostic labels that, for Hess, distance her from the understanding derived from her lived experience. As a genetic counselor reading these passages, I was struck by how seemingly benign interactions can be construed as reinforcing genetic determinism. Other GCs may resonate with these moments and reflect on how Hess’s viewpoint may inform their own practice going forward.

Many pregnant people learn that their child has a genetic disorder before ever meeting them. Hess discusses the diagnostic odyssey she underwent to confirm her son’s Beckwith-Wiedemann syndrome, and indeed, Second Life itself is structured like a labyrinth, with each chapter revealing a new branching fork of potential complications and anxieties. In Hess’s case, once her son finally is diagnosed, she is offered a wealth of information by her genetic counselor, other members of her care team, and internet sources, none of which can answer her most fundamental questions. Who is my son? Will he be okay? Can I be a good parent to him? For weeks before and after her son’s birth, the most salient knowledge she has about him is the list of clinical features and cancers associated with BWS.

In a subsequent podcast interview about her book, Hess tells the interviewer, “When [my son] was born, he had some of those markers, and he’s the most beautiful person in the world to me. And I hate any inkling of thinking that anyone is judging him or has stigmatized him for looking different, and knowing that I did that before anyone else.”

What can genetic counselors take away from Hess’s story? Much of our graduate training focuses on the psychosocial implications of genomic information, but Second Life encourages readers to examine how and why genetic testing — and medicalization more broadly — may feel disempowering in certain circumstances. Similarly to other technologies and mediums, genetic testing is a means of interpretation, one which translates health, symptoms and sensations into risk. Understanding these risks can guide treatment and even save lives, but it can also lead to excessive pathologization by both patients and providers. By recognizing this tension, genetic counselors may more effectively balance the medical and the human sides of patient care.

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