By Christa Teston
We live in a time when individual health can be forecasted through genetic testing, monitored with wearable health technologies, and insured after shopping in an online marketplace. Gaining a sense of control over our health futures has never been more available. It has also never been more expensive. According to the Centers for Medicare and Medicaid Services, the United States’ total health-related expenditures as a percentage of gross domestic product has increased from 5.1 percent in 1960 to 17.4 percent in 2009. In an age of commodified health futurity, how do we ensure ethical care?
The U.S. Food and Drug Administration’s (FDA) recent approval of 23andMe, Inc.’s direct-to-consumer marketing of an at-home genetic testing kit for Bloom Syndrome is but one example of how health futures are constructed through commodified biomedical technologies. Biomedical technologies that shape constructions of possible health futures aren’t just located in laboratories and hospitals, however—we wear them on our wrists while they count steps, monitor sleep, and estimate caloric burn. The problem of how to document and store ubiquitous and persistently available body data has led to the commodification of yet another care technology: the electronic medical record. Physicians and other health professionals have been incentivized monetarily by the U.S. Government’s Centers for Medicare and Medicaid Services to adopt electronic medical recordkeeping as a standard practice. Technologies such as the electronic medical record, direct-to-consumer genetic testing kits, and FitBits are not just methods for documenting an abundance of body data. They have also been marketed as technologies that afford individual empowerment, choice, and the democratization of medical decision making.
Perhaps those living in industrialized nations have always been consumers of health. But given increasing consumer demand and subsequent availability of health technologies that may or may not be intended to act as surrogates for human-to-human care, how might technical communicators operationalize an ethic of care in a manner sensitive to the ways in which health futures are commodified?
Those of us who study and teach technical communication have found at-home genetic testing kits, wearable health technologies, and electronic medical record software interesting and meaningful sites for improving user experience, documentation, and design. Given the role of technology in the commodification of health futurity, technical communicators are uniquely positioned to help enact an ethic of care.
What follows are three propositions for an ethic of care that technical communication scholars, practitioners, and educators might consider as they work at the intersections of medicine, science, and bodies—whether it be as an architect or designer of user experience, documentation software, or interfaces. Throughout, I operationalize Annemarie Mol, et al.’s definition of good care as “persistent tinkering in a world full of complex ambivalence and shifting tensions” (14) since, in a way, technical communicators are experts in tinkering. Either as reminder of or revision to an ethic of care not yet attentive to commodified, biomedicalized health futures, I propose the following.
1. Care is not solely a human enterprise.
Technologies do not merely intervene upon illness or mediate care—they are constitutive. An ethic of care in an age of commodified health futurity is attentive to the role of tools and technologies as equal contributors to contexts of health, wellness, disease, and disorder. Such a proposition opens up possibilities for technical communicators’ understanding of use, experience, documentation, and design.
Within an ethic of care that assumes that tools and technologies are not merely epiphenomenal to contexts of disease, diagnosis, and prognosis, technical communicators might explore the ingenuity of unintended use—e.g., using mirrors and sun to sterilize surgical tools in non-industrialized clinics; aggregating social media posts as a way to map the spread of epidemics; or hacking a glucose monitor to better manage diabetes. Unintended use might be seen as a strategy for “persistent tinkering” amidst medical uncertainty.
Technical communicators working at the intersection of medicine, science, and bodies might find more ways to integrate opportunities for tinkering into medical technologies’ design. For example, electronic medical record software designers might create interfaces that can be modified to meet the needs of a specific user—e.g., since a dermatologist’s workflow is not the same as a surgeon’s, unnecessary noise might be reduced during real-time medical documentation by creating specialty-specific interfaces and menus. Technical communicators could also find ways to make communication modifications less onerous for the user—reducing the number of times a question is repeated on a medical questionnaire, for example, by linking datafields to form outputs.
2. Medical evidences are co-constructed phenomena.
Findings from clinical trials and other scientific methods for constructing evidences are always intimately tied to the medical experiences of actual, individual patients. For example, when a consumer of an at-home genetic testing kit sends their saliva sample to the laboratory for analysis, he or she will not only receive results of their genetic makeup based on ancestral comparisons—they also give consent to contribute their individual, genetic information to an international database (called a HapMap) upon which future assessments of others’ genomes are based. Moreover, a consumer purchasing information about his or her genetic ancestry ought to be aware that such information is based on scientific algorithms and computational mathematics that afford inferences between the individual consumer’s data and the genomes of one of four statistically constructed, generalized populations (sub-Saharan African, Native American, East Asian, and European).
Another example of how medical evidences are co-constructed is the very notion of a “standard of care.” Medical standards used to make decisions about how to care for a patient with colon cancer, for example, are the result of analyses of previous patients’ experiences with a particular intervention (to the extent that they are inferred statistically in randomized controlled trials). At the same time that these interventions are introduced into the lives of today’s patients, future interventional possibilities for tomorrow’s patients are constructed. As additional data becomes available, technical communicators can help with the ongoing and iterative design or tinkering of standard of care protocols. Boundaries between time, place, patient, and provider are muddied in an ethic of care that considers what Karen Barad calls the “lively relationalities of becoming of which we are a part” (393).
An ethic of care in an age of commodified health futures ensures that both consumers and care providers are aware of how evidences are neither neutral nor autonomous, but co-constructed phenomena. Technical communicators can facilitate ethical care in this instance by helping to articulate to consumers the construct of biosociality (the co-production of health by biology, technology, and culture) as well as what consent looks like when their individual body data is used to build an international database of genomic information or act as a control for a clinical trial.
3. Health is relational.
Health is not a thing an individual body has. Health is produced through relations between bodies and things. Neoliberal values of personal autonomy, empowerment, and choice lie at the center of the commodification of health futures (many of modern medicine’s recent marketing campaigns seem to eschew expertise while championing radical individualism). A quick look under the hood of commodified health futurity, however, reveals the ways in which care is still a set of social, collaboratively constructed practices. Location (e.g., proximity to grocery stores where healthy food is sold), time (e.g., ancestral heritability), and geography (e.g., living along fault lines or near fracking sites) are but three participants that interact with biology in ways that produce health.
Technical communicators play an integral role in highlighting how our entanglements with humans and nonhumans shape acts of diagnosis, prognosis, and treatment. Constant critical attention to the ways in which care is not just a human enterprise, evidences are co-constructed phenomena, and health, in general, is relational provides an ethical framework from which technical communicators and other stakeholders might carefully enact methods for tinkering in a “world full of complex ambivalence and shifting tensions.”
CHRISTA TESTON is an assistant professor of English at The Ohio State University. She teaches courses in professional and technical writing. Her current book project explores how medical decisions hinge on the backstage material and rhetorical labor involved in constructing, assessing, synthesizing, and commodifying evidence.
References
Barad, Karen. 2007. Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham, NC: Duke University Press.
Mol, Annemarie, Ingunn Moser, and Jeannette Pols. 2010. Care in Practice: On Tinkering in Clinics, Homes and Farms. Verlag: Transcript Press.
