Personalized Medicine: Empowered Patients in the 21st Century?

Personalized Medicine: Empowered Patients in the 21st Century? Barbara Prainsack, New York: NYU Press, 2017, 288 pp.

In the last decade, a growing number of researchers have investigated data-intensive, post-genomic science, examining how sociotechnical changes have affected the politics and practices of biomedicine. In Personalized Medicine: Empowered Patients in the 21st Century?, Barbara Prainsack draws on her experiences leading a cross-disciplinary effort around personalized medicine with the European Science Foundation, to examine personalized medicine as one particular sociotechnical change in biomedicine. She begins by asking the simple question: “If medicine has always been somewhat personalized, what’s so special about personalized medicine now?”

Echoing other scholars in the field of science and technology studies, Prainsack outlines how the nature of evidence is changing in modern biomedicine, with more value being placed on “structured, digital, quantified, and computable data” (p. 4). Her focus, however, is on the expansion of what counts as data beyond the health care context, to include data from devices like mood trackers and smart watches. Amassing this data requires new forms of participation from patients, and in popular discourse, such participation is often framed as patient empowerment. Prainsack’s book, therefore, seeks to unpack the structures that contribute to and enable the changing role that patients are expected to play in healthcare. It is not a coincidence,” she writes, “that we see a renewed emphasis on patient participation at a time when medicine is particularly hungry for data and other contributions from us all” (p. 11).

To explore the changing forms of participation that are required from patients in the era of personalization, Prainsack examines how data are generated and extracted from patients and how this extraction entails changing power dynamics and relationships between the private and public sectors. Drawing on case studies of self-tracking products like PatientsLikeMe and Nike’s Fuelband, as well as molecular health developments like direct-to-consumer genetic testing, she illustrates how new technologies require users to “give back” in increasingly broad ways, leading to patients who are always “turned on.” But for Prainsack, the real problem is the shifting power dynamics around who has control of data, in these new assemblages of patients, corporations, public institutions, and medical professionals. The blurring of the lines between public entities and private corporations, claims Prainsack, raises issues around privacy and informed consent, especially as people cannot opt out of participation without experiencing significant disadvantages.

Readers of Personalized Medicine will be familiar with Prainsack’s analyses of power in the increasingly corporatized world of biomedicine. Here, Prainsack is in good company among other scholars such as Kaushik Sunder Rajan and Jenny Reardon, who draw on Foucauldian analyses of power. Where Prainsack excels, however, is in her clear analysis of how biomedical developments empower some and disempower others. She highlights the tangible effects that participating or not participating can have on patients’ health and well-being. For example, in Chapter 2 she discusses how, with the rise of digital health platforms, patients can be disempowered from participating not just along the lines of income, but along the lines of technological literacy. On the one hand, this creates new forms of health care that unintentionally exclude some people from access to cutting edge medical interventions. On the other hand, it leads to incomplete datasets that lack key types of data—from those who are less educated, older, or from lower income countries.

Here, Prainsack’s methodological toolkit comes into focus. Throughout the book, her analysis is sociological rather than ethnographic: The book draws together many research projects in the broad area of molecular technologies and patient participation, utilizing a combination of interviews and textual analysis, but ultimately Prainsack relies heavily on a synthesis of existing materials. Anthropologists might see this as the biggest shortcoming of this book, which requires the reader to rely on Prainsack’s analysis, without allowing the reader to evaluate the evidence, in all of its complexity, herself. For example, Chapter 4 discusses how the quantification of imaging changes the configuration of health care and disempowers radiologists by taking away their expertise and giving way for corporations to play a role in disease diagnosis. Missing here are accounts of radiologists themselves. Medical anthropology has done a good job of showing, particularly through its engagement with feminist critiques of technoscience, how people are not passive recipients of disempowering experiences, and instead find pragmatic ways to adjust. A more ethnographically minded analysis might be able to show not only how new technologies change the medical landscape, but also how certain actors’ roles are changing in dynamic and contested ways. What if, for example, radiologists embrace the rise of technology because it automates formerly “grey” practices? Or what if such automation frees up time to do other tasks?

As she looks at participation, Prainsack also examines how biomedical notions of “personalized” depend on overly narrow definitions of what it means to be a person. Such notions, she claims, place too much emphasis on individual autonomy, obscuring how medical experiences are often interpersonal, for example in decision making at the end of life, and organ donation between two people. As an alternative to health care initiatives that rely on purely biomedical or molecular data, Prainsack advocates for initiatives that take into account the subjective experiences—what she terms “social biomarkers”—that matter to patients during care, such as habits, emotions, or shared experiences. Issues around privacy, informed consent, and empowerment, she claims, can be countered by the inclusion of different types of data that match the goals of patients and not just the health care complex, and also by implementing personalized medicine in more equal (universally accessible) and transparent (no black-box algorithms) health care settings.

What is perhaps missing from this analysis, however, is a critical account of the practices that enable the inclusion of subjective measurements of patient experience into health care. As such practices seek to quantify hard-to-measure dimensions of the health care experience, they can also lead to new power asymmetries, as some things are inevitably amenable to quantification and others are not. Patient experience initiatives are often used to link patient data directly to business outcomes, such that incentive structures remain the same and data are still aligned along the axes of business interests rather than privacy, equitable access to care, or informed consent. A more critical analysis of these new practices could reveal the even more complex terrain of power and participation in modern biomedicine that emerges when social data are collected but made to fit existing quantitative frameworks. A more radical conclusion to Prainsack’s book would then suggest a reevaluation of the types of outcomes or measurements that are reinforced through the biomedical system and a general questioning of the value placed on various forms of quantitative data.