Abstract
Big data promises big changes in health care, offering a new personalized medicine dependent on large-scale access to patient data. While some may have qualms about furnishing such data, by now many of us have done it, such as by using fitness trackers that gather it for large corporate concerns. Blum’s is tracked, for example, by Virgin Group Ltd. through her university’s wellness program. Perhaps you, like us, have had relatives who purchased direct-to-consumer genetic analysis through 23andMe, thus contributing personal material to one of the world’s largest private DNA databases (p. 95). Nearly all of us have clinical records in online systems and have searched for or shared health information over social media, furnishing more data. At least since the bombshell that Facebook sold data to right-wing Cambridge Analytica before the 2016 election—if not the recent revelation that identifying personal data from closed patient Facebook groups was left vulnerable to data scraping—we’ve worried more about the privacy of online information.
In Personalized Medicine: Empowered Patients in the 21 st Century? Barbara Prainsack offers a far-reaching examination of this proliferating bioinformation and its implications for healthcare provision. As a political scientist who helped lead the European Science Foundation’s construction of regulatory frameworks for data protection, Prainsack guides us carefully through a burgeoning literature—and a decade of her own work—exploring the promise and the perils of the new regimes of data-rich precision-genomic medicine and patient “empowerment.”
We read Prainsack’s thoughtful analysis from somewhat different vantage points: both gender scholars interested in health, illness, and embodiment, Blum is a relative outsider (though, full disclosure: she earlier reviewed the manuscript for NYU Press) while Surkan is a Participant Representative to the Steering Committee of the U.S. National Institutes of Health “All of Us Research Program.” All of Us, originally President Obama’s Precision Medicine Initiative, is creating a large, public data set that is longitudinal and more inclusive of groups historically underrepresented in biomedical research than corporate-controlled databases. As in similar initiatives in the United Kingdom, experts will use this data to map the complex interactions of genes, environment, and lifestyle that can assess individuals’ disease risks and potentially offer targeted or “personalized” care and treatment.
Prainsack emphasizes that health-care providers have long endorsed personalized approaches, but western biomedicine has now turned away from patients’ narratives and thick descriptions of symptoms to prize evidence that is “digital, quantified, and computable” (p. 4); this in turn requires more participation and “patient work” (p. 11) outside the clinic using web-based tools to collect ever “wider ranges of molecular and nonmolecular data” (p. 5). In a measured consideration of the relationship between technology and power informed by (and generously citing) interdisciplinary scholarship and Science and Technology Studies, Prainsack avoids hyperbole in asking what our future health care will look like. She points to two starkly divergent outcomes, depending on whether we simply center “evidence produced by technical devices and algorithms” or instead use “shared decision making, dialogue, and ‘subjective’ values of patients” to govern its use (p. 89).
For genuine patient empowerment, Prainsack instructs that deliberate political efforts are needed. Without this, data-driven medicine will likely increase neoliberalism’s hold, exacerbating inequality, reinforcing discourses of “personal responsibility,” and turning attention away from the social determinants of health. She stresses that nations with single-payer, universal systems have a substantial advantage: “patients are [already] part of a collective” (p. 17), and the relational, solidarity-based standards she advocates may keep policies focused on “societal welfare” rather than “the interests of giant transnational corporations” (p. 151). Though austerity-minded governments all wish to “outsource” public health, in privatized, multi-payer systems like those in the United States, patients will likely remain “individual actors . . . expected to assume responsibility for their supposedly free and autonomous choices” (p. 18), to know their individual risks and act to reduce them, and “to take the blame if things go wrong” (p. 84). Prainsack points out the irony, well established by sociologists, that social factors overwhelmingly constrain or enable such “choices,” sorting health and risk largely according to structural inequalities of class, gender, race-ethnicity, and nationality, along with access to decent housing and food, clean air and water, and lives free of serious stress and violence. At least in the United States, personalized medicine thus seems likely to benefit the health and research agendas of the privileged—and, as Prainsack suggests, it could increase the unpaid and underpaid care burdens falling most heavily on women, people of color, and immigrants.
Prainsack is strongest in illuminating how social media and digital infrastructures increasingly turn patients into mere data transmitters with little say about what happens to their data, while still complicating boundaries between public and private, nonprofit and for-profit organizations. She traces the origins of web platforms PatientsLikeMe and CureTogether to patient groups who wanted to share health information. As these sites grew, so did the value of the shared data, which could then be sold to pharmaceutical companies, device manufacturers, and others with market interests in particular conditions. Prainsack differentiates between PatientsLikeMe, which began as a for-profit concern founded by three engineers with loved ones suffering from ALS (aka Lou Gehrig’s disease), and CureTogether, originally a nonprofit founded by self-trackers for users to search for effective treatments from those with similar conditions, symptoms, and demographic traits. Both sites allowed patients to easily share information, initiate participatory research, locate clinical trials, and suggest new conditions to add, and they ultimately monetized their platforms in distinct ways: PatientsLikeMe sells its data to third parties without patient input, “reap[ing] the financial profits” (p. 109); CureTogether was acquired by private genome-testing 23andMe. For Prainsack the point is not to condemn such blurring of public and private interests, but to institutionalize policies that require multi-level transparency, scrutinizing participants’ relationship to decision-making about databases, future initiatives, and finances. She also advocates policies that exclude as few as possible from participation, make algorithms and predictive analytics transparent, and flatten the “profound power asymmetries between corporate actors” and citizens (p. 189).
This is a very tall order, not only because of those corporate actors, but because the massive participation, data-sharing, and open sources needed to realize the promise of precision medicine also threaten privacy, inviting surveillance and differential treatment. Prainsack advocates the adoption of harm-mitigation funds, in addition to legal protections, to deal with this, though it is not clear how such funds can be deployed effectively to prevent health-based discrimination. Overall, Personalized Medicine is an ambitious work, tackling the implications of this digitized world in which effective solutions will likely need to transcend borders and yet address health care systems that function very differently within differing relations of inequality. Prainsack’s discussion of European Union examples such as the General Data Protection Regulation, while informative, may not be immediately relevant in other contexts. She moves a bit too easily, for example, over entrenched political-economic differences between the United States and Europe, striking discordant notes for us when listing so rationally the benefits of universal coverage or of initiatives to cut waste and unnecessary treatments. Nonetheless, Prainsack does not let us forget that addressing structural health disparities should be our priority. Personalized Medicine is, in short, a significant work, one that would be eye-opening for U.S. students less familiar with how far ahead European nations are in addressing our twenty-first century challenges.