Turning to the Structural in the Health Humanities

Gabi Schaffzin // I remember being at the South by Southwest Interactive conference in 2014 when Anne Wojcicki, co-founder and CEO of 23andMe gave one of the keynotes. The Yale-educated former investment banker was explaining how the healthcare related portfolio that she had managed in her past life actually profited from people getting sick; she was at SXSW to explain that her then relatively young company would shift a cultural emphasis of care to an emphasis of prevention. Her vision included, for example, reducing cancer treatment expenditures by knowing our chances of getting that cancer and changing our individual lifestyle to cut it off at the pass. There was, of course, a subtext to this prediction: a concurrent market shift—in both investments and profits—from institutionalized care-taking to individualized preventative measures such as self-tracking and, certainly, genetic testing. This shift has, in fact, occurred, though perhaps not in the same way that Wojcicki explained: those individualized approaches are being launched out of start-ups and companies like 23andMe, but also through major healthcare organizations like insurance companies and hospital conglomerates. And those that are being championed by independent corporations are often doing so with investment or technologies from major consumer and biotech players like Apple and Genentech, companies profiting off structures of surveillance and, certainly in the case of Genentech, pharmaceutical monopolies.

These are the phenomena that Olivia Banner documents and responds to in her 2017 Communicative Biocapitalism: The Voice of the Patient in Digital Health and the Health Humanities. She does so, in her words, “with the intention of modeling how scholars…might read for structures” (20; emphasis hers). Accessibly written, the work can be seen in conversation with a recent proliferation of self-care related research, such as Deborah Lupton’s The Quantified Self (2016) and Dawn Nafus’s Quantified (2016). Banner takes on HealthKit and 23andMe alongside Quantified Self products such as the Fitbit, patient care online communities such as Patients Like Me, and broad-sweeping cultural phenomena such as Breast Cancer Awareness Month. She mixes ethnographies of each of these with references from the worlds of art and literature as well as philosophy and critical studies.

What makes Banner’s work unique is how she starts off by highlighting the inadequacies of the health humanities and narrative medicine fields. Her argument, that these fields are too individual-forward, helps establish the structural approach that she takes throughout the rest of the book: “One of the goals of structural competency is to move away from the current emphasis on individuals learning to behave better and instead toward individuals understanding how institutions and structures condition that behavior” (46). Telling a doctor, that is, to pay closer attention to what their patients of color say to them will not do enough if the doctor does not understand those patients’ narratives in the context of systemic inequalities. Those inequalities are then elucidated in her following chapters—Apple HealthKit’s inability to identify pulse properly on tattooed or non-white skin, for instance.

I do wonder how the work will hold up to rapid shifts in technology—not in the overarching critique, but in the specific examples chosen. This is not so much a criticism of Banner’s research but a reflection of my own anxieties regarding how best to choose my subjects of critique to withstand the test of time. Will a student in twenty years feel the same way about reading a critique of PatientsLikeMe.com as my students feel today about reading chronologies of America Online from the early 2000s? That said, the job of an ethnographer and critical media scholar is to document socio-political phenomena as they occur so that we might contextualize them in larger cultural shifts. Banner does a brilliant job of this and is able to weave in many relevant and intriguing responses from artists and writers alike. “Because digital media create another layer of mediation in which power and inequalities are embedded,” she writes, “it becomes even more urgent, to my mind, that we develop new interpretive tools capable of revealing them” (3). In all, I have so far recommended Communicative Biocapitalism to my art and design colleagues, as well as those in the social sciences, science studies, and—really—just anyone who will listen to me.

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