Our Bodies, Their Data: Tracing Biopolitical Circuitry & the Illness Experience on PatientsLikeMe.com

ABSTRACT

This project seeks discursive and corporeal threads that connect Foucault’s biopower to experiences of online-mediated biomedicalized illness and healing. Theorized through a reading of the web-based patient support community PatientsLikeMe.com (PLM), this inquiry departs by engaging with the following assumptions, which offer access to the spaces where corporeal, technological, and cultural stakes intersect and constitute each other through biopower: 1) contemporary experiences of both illness and healing are marked by the proliferation of more complex and diffused technologies of bodily transformation and control and are mediated always by the looming meta-presence of corporatized bio-economies and 2) discourses of community, connectivity, and agency are mobilized in the work of neoliberal biopower, revealing an intricate circuitry that frames access to one’s “best self” through active participation in socialities and community-making projects that simultaneously apply pressure to participate, produce, and perform certain kinds of vitalities in the service of capital. Drawing on these theoretical orientations, I ask how PLM facilitates an encounter with the “biological self” that produces possibilities for bodily autonomy, agency, identity, and connectivity, while simultaneously enfolding bodies into more complex regimes of self-regulation, monitoring, hyper-vigilance, and governmentality, explicitly in the name of data-generated profit. Working with a theoretical genealogy that moves from Foucault to contemporary theorists on biopower and biomedicalization, including Adele Clarke and Nikolas Rose, this project uses the rhetorical and discursive underpinnings of PLM to theorize the ways in which contemporary biopolitics adheres to both virtual and material bodies, reshaping engagements with our own corporealities, identities and communities.

 Orientations: Biopower, Vital Economies, and Biomedicalization

This work seeks out the discursive and corporeal threads that connect Michel Foucault’s notion of biopower, initially developed in 1978 in the final section of The History of Sexuality, Volume 1, to a contemporary context of biomedicalized illness and healing. Drawing on contemporary theories of biomedicalization, it works from the assumption that both illness and healing are marked by the proliferation of more complex and diffused technologies of bodily transformation and control and are mediated always by the looming meta-presence of corporatized bio-economies. In this sense, I am especially invested in tracing the ways that discourses of community, connectivity and agency become mobilized in the contemporary workings of biopower. Attention to these dynamics reveals an intricate circuitry that frames access to one’s “best self” through participation in socialities and community-making projects that simultaneously apply pressure to participate, produce, and perform certain kinds of vitalities in the service of capital.

In its dual rhetoric of collective patient support and the fact that the site sells all patient-submitted health data to pharmaceutical and biotechnology companies, PatientsLikeMe.com (PLM) offers a rich platform through which to trace the discursive, corporeal and corporatized workings of biopower as it circulates within economies of sociality, mutual support, alternative forms of knowledge production, and the shared performance of illness identities. Likewise, Nikolas Rose’s theorizations developed in The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century mobilize Foucault’s concept of biopower within a contemporary context, offering a nuanced framework through which to think through the biopolitical inscriptions constantly being produced and performed on PLM.

Overall, this project asks how PLM facilitates an encounter with the “biological self” (Rose’s term) that produces forms of bodily autonomy, agency, identity and connectivity in the context of biomedicine and the illness experience, while simultaneously enfolding bodies into more complex regimes of self-regulation, monitoring, hyper-vigilance and governmentality – explicitly in the name of data-generated profit. The methodological routes deployed to assess this question are as diverse as the material and virtual spaces where biopower lurks, signaling a theoretical assemblage that attempts to unpack the myriad ways that virtual and discursive technologies of biopower operate and mediate. I begin with an analysis of Foucault’s biopolitics, reading his original theorizations of biopower along with contemporary theorists on biomedicalization in order to feel for the resonances that incite and regulate bodies towards certain kinds of vitalities in the service of capital. Next, I briefly situate the contemporary workings of biopower and biomedicalization within the context of web-based social networking experiences through an engagement with Kristin Barker writing on medicalization in electronic support groups for fibromyalgia. Then, I sketch the operational and discursive workings of PLM through a rhetorical analysis of their stated mission, goals, user profile layout, and policies regarding “data sharing” to illustrate its relevance to a biopolitical analysis. Finally, I turn to Rose’s theoretical framework, particularly his conceptualizations of vital politics, technology, and biological citizenship to read several elements of PLM as examples of an incitement towards reshaping “the vital future by action in the vital present” (Rose 18). In insistently attending to the dual discourses of community/agency and self-regulation/capital accumulation that circulate within the varying registers of PLM, I hope to more fully illuminate the practical and theoretical spaces where biopolitics adheres to virtual and material bodies, reshaping engagements with our own corporealities, identities and communities.

Transformation and Commodification: Constituting the Right to Vital Life

In the final section of the seminal critical text The History of Sexuality, Volume 1, Foucault turns his attention away from explicit engagements with the discursive and regulatory workings of knowledge and sexuality that constitute the previous sections of the text and focuses instead on a analysis of power that attends to the politicization of the Western body through its shifting relationship to techniques of life and death. In framing how the biological body became explicitly political beginning in the seventeenth century, Foucault argues that there was a marked turn away from regimes of power that operated through the consolidated privilege of a sovereign entity to either grant life or deal death and towards a more diffused circuitry of power that relied on the careful management of bodies in their capacity to remain both vital and productive. “Power,” Foucault argues, “would no longer be dealing simply with legal subjects over whom the ultimate domination would be death, but with living beings, and the mastery it would be able to exercise over them would have to be applied at the level of life itself” (143). Theorizing this turn especially in relation to the development of industrial capitalism, which hinged on the endless replication of a population of vital, healthy bodies to drive the emergent forces of economic production, Foucault deploys the term “biopower” to frame the techniques of regulation, optimization, calculation, and knowledge production that generate and proliferate this incitement to life: “One would have to speak of bio-power to designate what brought life and its mechanisms into the realm of explicit calculations and made knowledge-power an agent of transformation of human life” (143). He further elaborates the operationalization of biopower in suggesting that, “such a power has to qualify, measure, appraise, and hierarchize, rather than display itself in its murderous splendor.” In Foucauldian terms, then, biopower signals the multiplication of individualized, institutionalized and socialized mechanisms of bodily transformation and population regulation that incessantly evade death in order to promote a knowledge-politics of vitality.

In situating the workings of biopower within the power-laden regimes of capitalist accumulation and the emergence of new and more diffuse technologies of population and bodily control, Foucault’s theorizations resonate powerfully in the 21st century context of biomedicine generally and biomedicalization more specifically. As many contemporary theorists suggest, biomedicine in the current era is steeped in the politics of corporatized capital accumulation (Timmermans and Oh 100) and a provocation towards commodified bodily self-management (Conrad 8). These dynamics become intelligible particularly through an attention to the “rights” Foucault argues circulate within biopolitical discourses: “the ‘right’ to life, to one’s body, to health, to happiness, to the satisfaction of needs, and beyond all the oppressions or ‘alienations,’ the ‘right’ to rediscover what one is and all that one can be” (145). Mobilizing current theoretical work on biomedicalization reveals the ways that these rights may only be accessible through participation in increasingly networked and interwoven mechanisms and technologies that draw bodies into biomedical jurisdiction with an invitation to ceaselessly pursue an emergent and more optimized sense of “self.” Concurrently, theories of biomedicalization also make visible the ways that these pursuits are mediated through discourses of self-management, regulation and corporeal transformation, which are heavily commodified and situated within intricate transnational market economies. In the Foucauldian sense, then, the pursuit of biomedicalized health, happiness, and the “true self” are not apolitical, but rather situated tenuously within the economic and corporeal circuitry of biopower that ceaselessly attends to the calculation, measurement and appraisal of the crucial affiliation between material bodies and productive vitalities.

Adele Clarke and colleagues astutely articulate this contemporary trajectory in biomedicine through the framework formulated in Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine. This work is also situated within a larger theoretical genealogy of medicalization that includes the work of Irving Zola and Peter Conrad. Distinct from medicalization, which Clarke defines as “the processes through which aspects of life previously outside the jurisdiction of medicine come to be construed as medical problems” (Clarke et al. 161), Clarke’s conception of biomedicalization refers to “the increasingly complex, multisited, multidirectional processes of medicalization that today are being both extended and reconstituted through the emergent social forms and practices of a highly and increasingly technoscientific biomedicine” (162). In this process, Clarke argues that political economies, surveillance regimes, developing forms of technology, modes of scientific knowledge production, and practices of corporeal, social and identity transformation are all harnessed towards an emerging moral and personal responsibility for the management of individual health and norms of embodiment:

The extension of medical jurisdiction over health itself…and the commodification of health are fundamental to biomedicalization. That is, health itself and the proper management of chronic illnesses are becoming individual moral responsibilities to be fulfilled through improved access to knowledge, self-surveillance, prevention, risk assessment, the treatment of risk, and the consumption of appropriate self-help/biomedical goods and services (162).

In this theorization, Clarke demonstrates the ways that contemporary biomedicine is situated within diffuse and multidirectional processes of incorporation that operate on technoscientific, economic, and embodied registers. Through a moralizing rhetoric of individual responsibility, these processes mobilize ill – and, crucially, not-yet-ill – bodies to adopt and participate in regimes of commodification and transformation that provide heavily mediated access to Foucault’s “right” to discover and become all that one can be.

Locating biomedicalization within the context of Foucault’s biopolitics reveals the ways that discourses of self-managed vitality and unfettered access to your “best” self inform and produce the contemporary medical landscape. That this landscape is no longer confined to the localized dynamics of a doctor-patient relationship is crucial, as it signals the entrance of a wide range of other material and non-material agents, sites, relationships and practices that constitute one’s emergent medical subjectivity and active relationship to the pursuit of health. Achieved explicitly through the confluence of particular economies and technologies, biopoliticized vitalities are also marked with an economic value that requires careful practices of self-governmentality. In addition to signaling an increase in the vigilant supervision of the self, these forms of self-governance, Clarke argues, contain the possibility for producing “new biomedicalized subjectivities, identities and biosocialities – new social forms constructed around and through such new identities” (165). Through this attention to biosociality, subjectivity and identity, Clarke opens up a route for thinking through an individualized and collectivized analysis of biopower that asks especially how discourses of agency, community and connectivity are implicated in the biopolitical management of contemporary ill bodies actively pursuing their right to health and vitality.

Illness on the Internet: Cultivating Communities through Capital

This project emerges from within the theoretical lineages proposed above. It is particularly invested in tracing the ways that contemporary manifestations of biopower mediate engagements between the self and increasingly complex medical landscapes, with a focus especially on the ways that those mediations produce, de-stabilize, and re-articulate forms of connectivity, agency and community-making that may mark experiences of illness and healing. Posing an inquiry regarding health and illness that attends to the biopoliticized dynamics of mutual support, sociality and patient-centered agency necessarily requires an attention to web-based virtual technologies, which increasingly facilitate new modes of connection, support, and knowledge production amongst people with shared illness experiences. These virtual avenues of seeking out connection, knowledge and support speak compellingly to the proliferating technologies available to those actively pursuing the kinds of vitalities that biopower demands. Kristin Barker parses the role of electronic support groups (ESGs) in the article “Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness,” suggesting that ESGs “provide laypeople with unprecedented opportunities to share information with one another and become experts in their condition. As a result, the process of understanding one’s embodied distress has been transformed from an essentially private affair between doctor and patient to an increasingly public accomplishment among suffers in cyber space” (Barker 21). In this work, Barker clearly demonstrates the dynamic and connecting role web-based technologies may play – situated explicitly outside of the location-specific power dynamics of a doctor-patient relationship – for those coalescing around a shared illness identity or experience online. Through an emphasis on virtual technologies that facilitate sharing information, re-articulating the conditions of expertise and publicly engaging with experiences of illness, Barker situates web-based technologies firmly within the vicinity of an inquiry that asks after the ways that agency, community and identity are implicated in the workings of contemporary biopolitics.

Concurrently, in attending to the emergent role of medicalization in ESGs, Barker also offers a way to begin thinking about some of the more insidious routes that biopower may take as it operates in web-based contexts, especially those oriented towards a more explicit pursuit of health and vitality in the face of illness. Although her work focuses specifically on the ways that patient-consumers develop lay expertise and mobilize the work of medicalization in ESGs to legitimate contested illness (fibromyalgia, in this case), the theorizations she offers on the connections between medicalization, the Internet and the increasing generative work of the market reveals some of the more contentious dynamics operating within web-based technologies of health and illness. Echoing Clarke’s work on biomedicalization discussed above, which speaks to the commodification of bodies and their vitalities, Barker suggests that, “briefly stated, it is increasingly the case that patients contribute to medicalization via their consumer ‘desire and demand’ for medical goods and services…The Internet can also fuel a consumer demand for medical solutions to a range of human problems” (22). In locating patient-driven consumerism as a key element within the processes of medicalization that may be effected through participation in online support groups, Barker demonstrates the increasingly visible role that commodification, corporatization and marketability play within web-based technologies designed to facilitate community-building and support. Although she does not attend so much to the larger regulatory workings of data-driven bio-economies or the accumulation of capital through transnational technoscientific labor markets, here Barker offers a theoretical inroad to begin tracing the ways that the dual discourses of community support and capital accumulation become co-extensive through biopoliticized web-based technologies that center on illness and healing. In particular, this tethering work invites in a more pointed engagement with PatientsLikeMe.com, which is situated explicitly within these contentious nodes.

PatientsLikeMe and the Production of Collective Illness Experience

            According to the “About Us” section of the website, which one can access without officially registering as a user, PLM was founded in 2004 by three engineering students from MIT (“About Us”). Two of the founders are brothers, and the narrative states that they were motivated to begin the development of PLM after another brother was diagnosed with ALS (Lou Gehrig’s Disease) at the age of 29. “The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life,” the blurb notes. “Inspired by Stephen’s experiences, the co-founders and a team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research, and improve patient care” (“About Us”). The narrative is also accompanied by a short video featuring founders Ben and James Heywood discussing the site’s beginnings, especially around the development of the first “community” on PLM, which was specific to sufferers of ALS and their families. Ben Heywood notes, “I think what was amazing was how quickly we as a family learned from the ALS community” (“About Us”). In addition to comments from the Heywood brothers, the video also features numerous shots of the site’s users donning PLM t-shirts and posing in various states of seemingly joyous activity with their family members, especially with spouses and children. A voiceover from Ben Heywood concludes, “I think our patients have really put a lot of trust in the community and us as a company to work with them on that journey and I think that’s a really core value of our company, to honor the trust that patients are putting in us” (“About Us”). Relying from the outside on a family-centered narrative that invites sympathy and solidarity with a family that has experienced the lived effects of illness and the (biopolitical) search to “extend and improve” one family member’s life in the face of potential death, PLM immediately begins by mobilizing the intimate affects and emotions that adhere to notions of community, trust and support in order to draw potential users into participation in the site.

This rhetoric is also echoed in the site’s tagline, “Your experience matters,” and through its main mission, identified as “Our Promise”: “PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you, and organizations that focus on your conditions” (“About Us”). Likewise, the main page of the site, which urges you to “Join Now! (It’s free),” contains several testimonials that further elucidate the emotional and affective discourses the site situates itself within: “Because of PatientsLikeMe, we are better able to recognize warning signs…[and] keep things in perspective. In short, PatientsLikeMe empowers us,”; “I joined because I didn’t want to feel alone any more”; and “PatientsLikeMe has provided me with new friends—people who are experiencing that same problems as I am” (“Main Page”). It becomes clear from the welcome page, then, that PLM operates within a register that simultaneously emphasizes individual responsibility, efficiency and empowerment, as well as the collective production of communities of support. Each of these “draws” into the site is filtered through a particularly sentimental rhetoric that engages the affects and anxieties of illness – both individually and collectively focused – that prompt a user to do something about the disconnection and disempowerment the site insinuates may accompany the illness experience. This is especially true of loneliness, as illustrated in the two testimonials from above that suggest joining PLM will bring a user new friends and a way to feel not alone.

In registering for the site, users are immediately prompted to begin developing their own profile, which is essentially the main form of site participation. This process includes identifying primary illnesses and conditions, updating information about dates of first symptoms and diagnosis, selecting other areas of interest (which may include Advocacy, Faith, Alternative Medicine, Relationships, Fundraising, etc.), and entering detailed information on everything from treatments pursued and daily and even hourly trackings of mood, stress level and quality of life to information on hospitalizations and recent laboratory and test results. These pieces of data are then converted into visual graphs and charts that populate a user’s profile in a colorful and simultaneously “scientific” layout that mimics a chart within a medical record. On a user’s individual profile page, these charts are cascaded underneath avatars that contain a user’s uploaded photo, which is adorned with badges that indicate that user’s main conditions, current bodily and affective state, and relevant demographic information. There are also buttons on the profile that allow you to contact or “follow” a particular user, which prompts the cross-user interaction the site claims is central to their mission. Finally, there are additional spaces for journaling and crafting narrative updates that annotate the visual data in charts, which allow for more subjective, narrativized, or self-reflexive engagement with current bodily states and the kinds of medical/scientific knowledge that legitimate an illness experience.

In the development of these user profiles, PLM facilitates an active sense of agency for users through its invitation to manipulate, engage with, and perform elements of the illness experience – explicitly to better connect with other “patients like you.” It also demands a careful and intensive process of bodily self-monitoring and self-management in the production of the visual graphs and charts that allow users to feel that they are taking a lead role in the pursuit of new avenues to health and in the virtual management of their corporeal bodies and illness identities. Finally, the site suggests the potential for new forms of knowledge production and the acquisition of lay expertise as patients re-claim the rights to test and laboratory results in the service of their own self-directed vitality. In this sense, PLM begins to emerge more fully as a biomedicalized and biopoliticized entity through this incitement to self-monitoring, self-regulation, and an adherence to practices of self and collective transformation.

Clarke’s individualized and moralizing rhetoric that she argues marks biomedicalized subjectivities certainly circulates in these discourses that encourage self and family empowerment through acts of virtual and corporeal control. PLM also speaks in crucial ways to her arguments regarding the re-organization of biomedicine: “Institutionally, biomedicine is being reorganized not only from the top down or the bottom up but from the inside out. This is occurring largely through the remaking of the technical, informational, organizational, and hence the institutional infrastructures of the life sciences and biomedicine via the incorporation of computer and information technology” (Clarke et al. 162). Here, Clarke offers a way to trace the links that tie the material and virtual bodies that participate in PLM to a larger structural and institutional trend towards technology-fueled biomedicalization that aims to make all facets of life – daily moods, daily stress levels, daily narratives of struggle and survival – commensurate with the overall illness experience. In the Foucauldian sense, these descriptions also make the workings of biopower more evident as the site’s particular features target bodies and their capacities for vitality (or, concurrently, their capacities to fully embody the sometimes productive space of illness) through acts of data-specific quantification and self-generated narrative qualification. As users take up the tools and techniques offered by the site as proposed routes to empowerment and connectivity, their corporeal bodies become incorporated into new and more complex regimes of virtual management that mediate access to the “rights” over one’s own body, health, and happiness, as well as to the “rights” of a family to enjoy the ill user’s best self.

Patient Data, Biomedicalized Capital, and the Ascent of Neoliberal Governance

Before I turn to Nikolas Rose to begin applying a more contemporary framework of biopolitics to a reading of PLM, attention needs to be directed towards the more insidious dynamic that operates throughout this site – the fact that all patient health data submitted by users is sold to “partners,” which includes non-profit and research and academic entities, in addition to more explicit “industry” entities that make up the private pharmaceutical and biotechnology sectors. This dynamic crucially signals the ways that discourses of agency, community and self-regulation become harnessed towards the explicit accumulation of capital for the site’s founders, and, eventually, for the corporations that utilize user data. Attending to this facet of the site is crucial to elucidating the stakes of a user’s decision to sign up, share their information and begin engaging in discourses of community and connection, as those stakes do not reside simply in the production of communities of support and the acquisition of bodily agency and autonomy, but are situated more nefariously in a diffused network of data-driven profit and, arguably, the neoliberal exploitation of bodily materiality.

Crucially, PLM is not shy about the fact that the “sharing” it facilitates extends far beyond the exchanges between individual users that constitute the site’s functionality. In fact, the site’s rhetoric works hard to frame this process in terms of transparency, openness and community-driven values. This framing increasingly subverts the fact that the site technically functions as a data-mining machine, generating constant profit through an exploitation of the affects and anxieties of illness and the deployment of the rhetoric of community. On the “About Us” section explored above, a qualifying paragraph immediately follows the narrative of the site’s family-centered founding, noting that, “Today, PatientsLikeMe is a for-profit company, but not one with a ‘just-for-profit’ mission. We follow four core values: putting patients first, prompting transparency (“no surprises”), fostering openness and creating ‘wow’” (“About Us”). In a rhetorical move that links these altruistic values with the actual practices that permit the continuous accumulation of high-value patient data, the paragraph continues, “We’ve also centered our business around these values by aligning patient and industry interests through data-sharing partnerships. We work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients” (“About Us”). By continuing to deploy narratives of sharing, trust, openness and care, PLM works hard to justify this explicit and incessant entrance of the market into the data-laden bodies of virtual patient-users by framing it as a way to develop practices and products that will ultimately assist users in reaching their own vitalities in newer and more productive ways.

In navigating successively less accessible pages, the details of this “data-sharing” component of the site become more tangible. In a page called “How We Make Money,” PLM reminds users that, “We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services” (“Corporate”). In this instance, the functionality of the term “sell” finally becomes explicit, rather than the preferred term “share,” which rhetorically eclipses the fact that illness experiences are essentially commodified and re-sold to patients through the economic circuitry that constitutes this site. The text included in the “How We Make Money” page also illuminates the depth and range of this “data-sharing”/data-selling mechanism: “Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients” (“Corporate”). Likewise, the “Privacy Policy” page spells out specifically which and how patient data is used, illuminating the fact that every piece of information other than a patient’s name, contact information (including email and mailing address), password, date of birth and private messages is potentially sell-able in the service of biotechnology and pharmaceutical industry interests (“Privacy Policy”).

This process is continuously framed within the rhetoric of the site’s “Openness Philosophy,” which suggests that issues including federal “privacy regulations and proprietary tactics” keep most health care data inaccessible to industry and research entities. By insinuating that patients have the capacity to “open up the healthcare system” through participation in the site, which will, therefore, “democratize patient data and accelerate research like never before” (“Openness Policy”), PLM once again mobilizes discourses of agency, collectivity, individual responsibility and the promise of better, more vital futures to justify the profiteering that happens on behalf of patient bodies and the data that is generated from those bodies’ illness experiences.

Melinda Cooper, in Life as Surplus: Biotechnolgoy & Capitalism in the Neoliberal Era, astutely unpacks the connections between the ascendency of neoliberal modes of governance and the rise of the biotechnology sector in the United States, reading this pairing explicitly through the lens of contemporary biopolitics. Although time and space do not permit a fuller engagement with her arguments in the context of PLM, I find her work compelling, particularly as she outlines the text’s first chapter in her introduction. “Neoliberalism and the biotech industry,” Cooper argues, “share a common ambition to overcome the ecological and economic limits to growth associated with the end of industrial production, through a speculative reinvention of the future” (Cooper 11). By situating discourses of speculative futures and reinvention within the spaces where neoliberalism and the biotech industry converge, Cooper more complexly reveals the stakes of PLM’s “data-sharing” practices as they are situated within a larger trend towards unfettered economic expansion and industry de-regulation.

Through a neoliberal rhetoric of democratization, de-regulation and accelerated growth, PLM mobilizes discourses of personal responsibility and patient agency towards new modes of market participation that may, as they suggest, be capable of transcending the economic and corporeal limits of the present through a frenzied pursuit of the future – an orientation that biopolitics both demands and survives through. In an anticipatory gesture, Cooper’s attention to the capacity for biotechnology and neoliberalism – as a confluence – to produce these speculative futures crucially references Rose’s theorizations about biopoliticized medical technologies, particularly in their capacity to “reshape the vital future by action in the vital present” (Rose 18). With this initial critical reading of PLM and its mission and functionality delineated more clearly, I now turn to Rose to begin threading together a more contemporary and textured reading of the technologies of molecular biopolitics, citizenship and biovalue that circulate within PLM. This reading will, I hope, continue to reveal the juxtaposition of discourses of community and empowerment versus self-regulation and data-driven profit that signal the sutured-together emotional, corporeal and economic registers that biopower operates within on this website.

Locating Biological, Molecular and Affective Selves

Rose’s theorizations developed in The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century resonate strongly with the readings of Foucault, biomedicalization and the practical and discursive workings of PLM, particularly through his immediate recognition of the multiple, often intersecting vectors that constitute the contemporary “medical assemblage,” which, I would argue, PLM is situated within. “As human beings come to experience themselves in new ways as biological creatures, as biological selves,” Rose argues in his introduction, “their vital existence becomes a focus of government, the target of novel forms of authority and expertise, a highly cathected field for knowledge, an expanding territory for bioeconomic exploitation, an organizing principle of ethics, and the stake in a molecular vital politics” (4). In locating the contemporary biopolitical body in sites ranging from knowledge production and governmentality to exploitative bioeconomic circuits and discourses of ethics, Rose immediately speaks to the complex set of material, virtual and discursive interactions that constitute and complicate the functionality of PLM.

A recognition of these interactions especially invites an engagement with the range of biopoliticized movements, mobilizations and deployments that become possible as users provide more and more disease-specific data to what Rose might call the site’s “technologies of optimization” (16) – the “hybrid assemblages of knowledges, instruments, systems of judgment, buildings and spaces…” (17) that facilitate new and more complex sets of human/social relations to the myriad potentialities contained in biopolitical vitalities. As complex “biological selves” emerge through participation in the site, the data-rich variables attached to those selves – the precise number of milligrams of an SSRI prescribed to a chronic depression patient, the most recent oncological laboratory test results of an in-remission breast cancer patient – are no longer tethered to any one coherent or corporeal body. Rather, they are fractured into informatic parcels and mobilized in the service of the endless array of actors, stakes and non-human entities that are invested in the site’s users – investments that all carry different levels of control and legitimacy in the widening scope of biomedicine. Pharmaceutical marketing firms, biotech researchers, health policy think tanks, fellow sufferers and caretakers may all take up and utilize these unique pieces of user data for their own purposes, which signals the ways that contemporary vital existences become differentially deployed within the dispersed networks and fields that produce “medical assemblages” in our contemporary moment.

In the broader context of PLM, these informatic dispersals may reach into the virtual spaces that facilitate intimate and affective connections or new modalities of support. This might be effected, for example, as two 45-year-old female users who both currently struggle to find the right balance of depression and pain medication to manage their fibromyalgia symptoms connect through a private message on PLM after following each other’s similar treatment trajectories using PLM’s “Treatments” tool. Less innocuously, this same informatic dispersal may also re-surface in the material spaces of bioeconomic capital accumulation as a transnational pharmaceutical company acquires that same treatment data, reads it against demographic information purchased from PLM, and mobilizes it towards the development of a direct-to-consumer marketing campaign that targets middle aged women for a new, recently-approved depression medication. Although I recognize that the circulation of patient data is often much less unidirectional or patient-specific than what is described here, this narrative begins to capture the complex range of deployments and interactions that occur through the functionality of PLM on a daily basis. Crucially, these deployments signal the expanded reach, depth, and meaning-making capacities of biopoliticized bodies that are made possible through the workings of this site.

This ongoing, de-regulated dispersion speaks especially to the continuous “molecularization” of contemporary biomedicine, which, Rose argues, marks the contemporary functionality of biopolitics: “Today, however, biomedicine visualizes life at another level—the molecular level. The clinical gaze has been supplemented, if not supplanted, by this molecular gaze…life is now understood and acted upon, at the molecular level” (12). This speaks especially to the molecular specificity of patient data generated through the self-reported laboratory test results tool and the individual reporting on genetic histories that is encouraged through the submission of genetic scans, which are then translated into complex visual mappings that appear on a user’s profile. Rose continues to explore the stakes of molecularization: “What is crucial, for present purposes, is that ‘molecular biopolitics’ now concerns all the ways in which such molecular elements of life may be mobilized, controlled, and accorded properties and combined into processes that previously did not exist. At this molecular level, that is to say, life itself has become open to politics” (15). In the context of PLM, Rose’s suggestions regarding the mobilization (and modalities of control) effected through molecular biopolitics continues to highlight the ways that increasingly specific data-rich vitalities provided through patient participation on PLM are broken down and re-mobilized into new networks and fields. Crucially, the suggestions evoke the new sets of power relations, processes of control and modalities of community-formation that did not exist before these virtual movements were possible or before the unidirectional power relations contained in the clinical/doctor-patient model were displaced by the complexities of medical assemblages in the contemporary era. In beginning with the contemporary fracturing and dispersal of the utilities – and molecular potentialities – of biopolitical bodies, Rose immediately offers a way to capture the hybrid social, affective, economic and political assemblages that subtend participation in PLM.

 PatientsLikeMe.com and Incitements to Ethical and Emotional Citizenship

Rose’s theorizations about the emergence of biological citizenship in the context of biopolitics also resonate powerfully within this reading of PLM, as they begin to further unpack the stakes of the socially-inflected and individually moralistic discourses circulating through the site that direct bodies towards new and more active modes of self and collective management in the service of capital accumulation. As a descriptive term, Rose suggests biological citizenship encompasses “all those citizenship projects that have linked their conception of citizens to beliefs about the biological existence of human beings, as individuals, as men and women, as families and lineages, as communities, as populations and races, and as species” (132). With this definition, Rose situates the “biological existence” of humans and their relational networks within the central tenets of modern Western/neo-liberal citizenship, which include social productivity, individual responsibility, community participation and the value of kinship. Crucially, these are concepts that also permeate the rhetoric of the specific functional tools offered by PLM and the site’s mission and goals more generally. This analysis makes clear the specific kinds of biopolitical incitements – specifically through discourses of participatory citizenship and individual responsibility – that PLM is capable of producing and proliferating.

Rose continues to push up against the spaces where biology, citizenship and “regimes of the self” converge when he suggests that, “these biological senses of identification and affiliation made certain kinds of ethical demands possible: demands on oneself; on one’s kin, community, society; on those who exercise authority” (133). Reading PLM’s rhetoric of community support and agency through the lens of biological citizenship makes clearer the ethical and emotional registers that are accessed in the site’s invitation to participation. The affective contexts of these registers play directly upon one’s duty to self, family and community to actively engage with the site’s technologies in order to pursue the possibility for an extended life and increased productivity that contemporary biological citizenship demands. In this sense, the evasion of death that marks a classic Foucauldian definition of biopolitics becomes an inherently personal and emotional project, one that is driven by an active and self-reflexive engagement with the illness experience in order to re-orient one’s biological materiality and status as a proper citizen towards life. In Rose’s terms, this project may also become collective, signaled by the emergence of biosocialities – “collectivities formed around a biological conception of a shared identity” (134) – that make the evasion of death a shared and socialized project with an emergent illness identity at the center of that work. In this respect, biological citizenship proliferates along each of the ethical axes that PLM operates on – individual and collective – demanding participation through an affective incitement to newer, better modalities of life.

PLM forums are a particularly rich space to begin unpacking the ways users perform and anticipate biological citizenship, as threads range from individual attempts to negotiate the ethical and emotional boundaries of life and death (“What’s Your Suicide Risk?; “How does one grieve the loss of a family member?”), to more collective attempts at parsing the fraught process of community building in the context of illness (“Feeling Invisible? Guidelines for Getting the Attention and Support You Deserve from this Community”; “What Not To Do With The Mentally Unwell”). These examples only begin to shed light on the ways that the emotions and affects that subtend the duties and responsibilities demanded by contemporary biological citizenship adhere to the virtual and material bodies of PLM users. In extending a biopolitical analysis to these processes, Rose’s conception of biological citizenship reveals the explicit rhetorical, technological, and affective mechanisms that facilitate active engagements with self-regulation and monitoring in the pursuit of vitality. That these engagements are filtered through discourses of community building, trust and mutual support only continues to displace the complex economic exchanges between patient data and bio-profit that ultimately arises from a user’s participation.

Imagining Illness Communities Beyond Capital

Tracing the dialogic encounters between material and virtual bodies, illness experiences, proliferating forms of technology, and the complex circuitry of bio-economies that arise through the functionality and usability of PLM has marked the theoretical movements contained in this project. With explicit attention to the contemporary workings of biopower situated within the evolving practices of biomedicalization, I initially asked how PLM might facilitate encounters with the “biological self” that both produce autonomy, agency, and connectivity and enfold bodies into more complex regimes of self-regulation and monitoring in the service of capital accumulation. From the outset, this inquiry inherently recognized the dual discourses operating through the site’s rhetoric and functionality. This analysis has demonstrated the ways that these dual discourses speak to each other, buttress each other, and rely on each other to produce a seamless user experience that feels supportive and affirming, while simultaneously (and less visibly) generating significant profit streams in multiple networked sites that are drawn explicitly from the molecular data and markers of bodily materiality that are provided as a condition of participation in the site’s larger goal of connecting “patients like you.”

In readings performed throughout this project, it becomes clear that these discourses do not simply speak to each other or run parallel to each other in order to the produce a cohesive “user experience,” but are co-constitutive in the overall process of neoliberal capital accumulation. In the biopolitical circuitry that makes up this site’s usability, bodies are enfolded into regimes of self-regulation, monitoring, hyper-vigilance and an ethical edict to manipulate and engage with the body’s vital processes specifically through an invitation to participate in processes of mutual support and community formation that will ostensibly create newer and better forms of care. These acts are, as the site’s user tools suggest, an active and agential response to the debilitating, de-vitalizing and de-activating experience of illness. If you won’t do it for yourself, the site’s images and rhetoric seem to suggest, won’t you do it for your family? Playing upon the affects and anxieties of illness is a key strategy to inviting – demanding even –participation in a larger for-profit mission that effectively creates new market streams and bio-economies through the exploitation of ill bodies and their proliferating materialities.

Miranda Joseph’s bold work Against the Romance of Community offers a compelling framework through which to re-imagine and re-orient the possibilities for cultivating shared emotional support and improved access to care and research for people experiencing illness that do not operate through the biopolitical and bio-economic circuitry of the PLM “community.” Joseph’s critique of community resonates with the interpenetration of community and capital explored in this work, as she suggests that both contemporary and historical discourses of community are constituted through supplemental performances of production and consumption that actively solidify and legitimate the social hierarchies that capitalism simultaneously relies upon and disavows (xxxii). Recognizing the emotional incitements that posit “community in a long-lost past for which we yearn nostalgically from our current fallen state of alienation, bureaucratization, rationality” (1), Joseph concisely elaborates the collective urge for intimate connection and authentic community that underlies often alienating illness experiences and situates it explicitly within the socially inflected economies of neoliberal capital accumulation explored here.

In the epilogue, Joseph turns to an alternative articulation of collectivities apart from the enduring legacies of community-via-capitalism that offers a convincing in-route to re-mobilizing the forms of affective connection and bodily data generated through the PLM model:

I have also held out for the possibility that productive participation in collective action need not only facilitate capitalism but might also be articulated as resistance or even opposition to the flows of capital…The performativity of production, of the production of communities, means that a great deal of agency resides with the producers of community to make our collectivities more disruptive rather than less…In order to do so we must read the social relationships in which our communities are imbricated and assess the implications of our political goals and strategies, and we must then reshape these goals, strategies, and actions with this, inevitably partial awareness in mind… (172).

Although I resist a call for the explicit politicization of all illness experiences in the name of collective action and mutual support, Joseph’s concluding remarks do signal the ways in which the productivity of ill bodies – of all the forms of data generated through biomedicalized illness experiences and of the legitimate forms of social and emotional support cultivated via web-based social media platforms – might be re-harnessed towards more ethical and less commodified peer-driven social and technological intervention into medical assemblages and care practices. Imagining what these endeavors would look like is a crucial site for visualizing futures in which bodies, technologies, affects, and collectivities can become differently productive through the illness experience, moving in circuits that do not compel participation in the insidious demands and incitements of biopower and capital but still collectively labor to generate new and creative practices of action, support and care.

 

References

Barker, Kristin K. “Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness.” Journal of Health and Social Behavior 49.1 (2008): 20-36.

Clarke, Adele; Mamo, Laura; Fishman, Jennifer R.; Shim, Janet K.; & Fosket, Jennifer Ruth.

“Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine.” American Sociological Review 68.2 (2003): 161-185.

Conrad, Peter, “The Shifting Engines of Medicalization.” Journal of Health and Social Behavior 46.3 (2005): 3-14.

Cooper, Melinda. Life as Surplus: Biotechnology & Capitalism in the Neoliberal Era. Seattle: University of Washington Press, 2008.

Foucault, Michel. The History of Sexuality, Vol. 1. Translated by Robert Hurley. New York: Vintage Books, 1990.

Joseph, Miranda. Against the Romance of Community. Minneapolis: University of Minneapolis Press, 2002.

PatientsLikeMe. “About Us.” http://www.patientslikeme.com/about.

PatientsLikeMe. “Main Page.” http://www.patientslikeme.com.

PatientsLikeMe. “Corporate.” http://www.patientslikeme.com/help/faq/Corporate#m_money.

PatientsLikeMe. “Privacy Policy.” http://www.patientslikeme.com/about/privacy.

PatientsLikeMe. “Openness Policy.” http://www.patientslikeme.com/about/openness.

Rose, Nikolas. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press, 2007.

Timmermans, Stefan & Oh, Hyeyoung. “The Continued Social Transformation of Medicine.” Journal of Health and Social Behavior 51S (2010): S94-106.