The COVID-19 crisis has activated two sides of our current biopolitical order. On the one hand, a mix of governmental organizations and private firms have developed public health measures to address the pandemic and its consequences at multiple social scales: from shelter-in-place ordinances at the state level, mask production and distribution, to vaccine requirements for indoor dining at the city-level. On the other hand, governmental, for-profit, and nonprofit biomedical research entities have rallied to shift their research programs and direct their gaze to the virus, its spread, and its varying short-term and long-term impact on people’s lives. In this brief viewpoint, I illustrate how these two efforts are connected to one another and draw from theories of biopower and biocitizenship to unpack some of the cultural and political stakes of this coupling.
Biological citizenship, or biocitizenship, describes the production of state subjecthood and its accompanying access to resources, rights, belonging, and care on the basis of a biological trait (Happe, Johnson, and Levina 2018; Petryna 2013; Rose 2007; Rose and Novas 2004). This biological trait can include injury, disability, shared genetics, physical attributes, or other molecular markers of difference. While not entirely separate, biological citizenship is sometimes contrasted with social or economic citizenship, such as that entailed by the receipt of stimulus checks or suspension of court-mandated evictions. For example, sociologist Alondra Nelson describes how in the 1970s, the expansion of U.S. federal funding for sickle cell anemia research signaled the inclusion of Black communities in U.S. health infrastructure, establishing their biological citizenship but not full social or economic citizenship (Nelson 2013). Others have shown how genomic research has been an especially powerful site for national projects that draw on claims to biological citizenship for the reification of their imagined communities (Kent et al. 2015; Liu 2010; Sung 2010). By drawing attention to the interplay between political projects, subjecthood, and medical knowledge production, the concept of biocitizenship exemplifies Michel Foucault’s notion of ‘biopower,’ which describes how medical discourses normalize and regulate the body. As Foucault explains in The Birth of the Clinic, epidemics activate a unique facet of the social contract between civil society and medicine. He explains that “an epidemic has a sort of historical individuality, hence the need to employ a complex method of observation when dealing with it. Being a collective phenomenon, it requires multiple gazes,” (Foucault 1963, p.25). In their contemporary instantiations, these multiple gazes include the fields of community health, epidemiology, genetics and molecular biology, nursing, and virology, among others.
The institutionalized coupling of healthcare and medical research during the pandemic complicates the production and diffusion of medical discourses because of the interplay of state, medical, and biopharmaceutical organizations. While this coupling is not unique to pandemic biopolitics (Benjamin 2011; Clarke et al. 2003; Dumit 2012; Sismondo 2004), in this article I explore how the scale of the response to the pandemic through large repositories of biological, medical, and genetic data, known as biobanks, amplifies the effects of the blurring of the boundary between care and research in contemporary biopolitics. Here, I first survey the organizational landscape of the intersection of genomics research and COVID-19 pandemic response, which serves as an exemplary case of this coupling. Research into how one’s genetic makeup may shape COVID-19 susceptibility, onset, and severity is an interesting case because it constitutes an expansion of medical genetics and genetic determinism into public health under the umbrella of ‘personalized medicine.’ Other cases of the interplay between private and public research organizations, such as the exponential growth and spread of wastewater-based epidemiology, the use of health apps, and the development of thermal imaging systems for monitoring the spread COVID-19 likewise merit sociological study (Coffman et al. 2021; John Leon Singh, Couch, and Yap 2020; Singer 2020), but are outside of the scope of this short article. I then draw on work in medical sociology to describe the growth and normalization of biomedical surveillance as a feature of the current biopolitical order. I argue that the pandemic has increased individuals’ visibility and conscription into various research projects of both state and for-profit scientific organizations. In doing so, this article draws the contours of an analysis of the post-pandemic biopolitical subject where state subjecthood via biocitizenship is bound to experimental research subjecthood.
Host Genomics Research
The coupling of care and research is partially due to a diffuse organizational response. At the start of the pandemic, to compensate for the delayed and fragmented government planning in the acquisition and distribution of viral tests, for-profit and nonprofit biomedical research entities began to develop and administer their own tests. And now, vaccine distribution has lagged behind need, as a patchwork of state, federal, and private organizations coordinate with one another to combat misinformation and quell vaccine hesitancy. Despite the hopeful reprieve brought about by vaccines, medical uncertainty about the progression of the pandemic and its disparate impact on individuals persists. This has left the Center for Disease Control (CDC) to manage a significant burden of medical uncertainty. Most saliently, the virus’ penchant for causing illness in patients with widely varying severity in ways that are difficult to predict has proven a significant biological puzzle. And the threat of future pandemic outbreaks with novel variants of COVID-19 and other viruses makes research into this puzzle a morally and economically worthwhile endeavor for both governmental, academic, and for-profit research organizations.
One salient vein of research has sought to explain COVID-19 susceptibility by focusing on host genomes (Kaiser 2020). State and private organizations have jumped on the research opportunity. National biobanks, including the UK Biobank, Icelandic company deCODE Genetics, and Finnish biobank FinnGen are conducting research linking genomic variants to COVID-19 patient outcomes. These large collections of medical records and genetic data from citizens represent major state achievements and enable a broad scope of biomedical and scientific research. In general, biobanks are housed in a variety of organizations, such as charities, hospitals, pharmaceutical companies, and universities, varying in their size, method, and governance structure. National biobanks have drawn considerable attention from bioethicists and social scientists who have underscored the social and ethical challenges that arise when the data collected by biobanks are shared with private commercial entities (Tutton 2010). Others have drawn attention to privacy concerns, as a mosaic of different oversight mechanisms can leave the risks associated with participating epistemically orphaned (Merriman and Molina 2015). As a public health resource, however, biobanks have been key for research into the COVID-19 pandemic at the national level and exemplify the duality of research and care in pandemic biopolitics.
Take the UK Biobank as an example. The biobank has deployed five major initiatives during the pandemic: a serology study to test for antibodies, a COVID-19 repeat imaging study, a coronavirus self-test antibody study, a coronavirus infection study, and a health data linkage study. To conduct this research, in 2020 they recruited 20,000 individuals from their nationally representative participant pool, asking each participant to provide six monthly blood samples using a kit sent to their home and completing health questionnaires. As they explain to prospective participants, “UK Biobank is a long-term prospective study, which means it plans to follow your health over many years. In this section you can find out about our current health studies that will add extra layers of detail to your health data. This ongoing relationship with you is one of the reasons why UK Biobank is uniquely able to enable scientific discoveries that improve human health. Without you, this would not be possible. Thank you for participating and your long-term dedication to tomorrow’s next key discovery,” (UK Biobank n.d.). The data collected by the centralized research organization has been instrumental to the UK’s pandemic response but specifies that participants in the study receive no direct benefit. The moral framing of participation obfuscates the stakes of participation for individuals, calling on them in the name of the public good.
To give another example, a leaflet for the imaging study explains how the benefits of volunteering extend beyond COVID-19, “Combined with other information you have provided, the scans will create a health resource of worldwide significance for many years to come. In addition to enabling unique research into COVID19, the scans will also help researchers to better understand early changes inside the body that occur in a wide range of other diseases including cancer, heart disease, dementia, diabetes, stroke and arthritis. […] (your) information will be used by approved researchers for medical and other health related research. This includes scientists working in other countries and in commercial companies,” (UK Biobank 2021). In institutionalizing this moralized form of participation and consent, however, the biobank calls on individuals and reifies the responsibilities of its polity as biocitizens. This helps explain the altruism behind individual participation in national genomic databases, and exemplifies the production of citizens as experimental subjects and as biological resources.
The production of citizens as biological resources is a hallmark of contemporary biopolitics and is supported by regulatory structures that were relaxed during the pandemic to ease scientific work. The biobank has made health data from 500,000 participants available to over 740 registered research groups worldwide that aim to study the genetic and lifestyle determinants of COVD-19 (UK Biobank n.d.). Even though the success of the UK Biobank and its legitimacy is carefully maintained by a constellation of governance bodies and regulations (Salter and Jones 2005; UK Biobank 2007; Winickoff 2007), the urgency of research on COVID-19 and the organizational complexity of data sharing multiplies known risks of privacy loss and misuse of data. While biobanks provide infrastructures for sharing biological data that greatly enable the coordination of research across organizations, one of the main obstacles identified by scientists to sharing biological data has been heterogeneity in sampling practices, storage, and consent requirement. As a response to the pandemic, however, public health institutions in several countries established policies and guidelines that relaxed cross-border data sharing. This has meaningful implications for both participants and a broader culture of volunteerism in biomedicine. This cross-border sharing complicates the idea that the value of individuals as biocitizens is primarily associated with the rights, resources, and care they might be afforded as research subjects in relation to the state. Instead, the epistemic value of citizens’ biological samples and health data accrues as it spreads.
Non-profit research projects can also extend the multiple gazes of pandemic response and further draw on the epistemic value of donated biological data. One focal point for coordination of research into the genetics of COVID-19 is the COVID-19 Host Genetics Initiative (CHGI). CHGI aims to streamline the sharing of data, know-how, and resources to identify genetic determinants of COVID-19 susceptibility and severity across 67 different academic, governmental, and commercial biobanks, 204 studies in 51 countries (COVID-19 Host Genetics Initiative 2020). In the CHGI, participant data is decontextualized and organized into meta-analyses that reduce participants to entries in larger samples. CHGI was founded and led by geneticists Andrea Ganna and Mark Daly of the University of Helsinki and Harvard Medical School. As the organizers noted in one of the first meetings in April 2020, “The extent to which we can unlock some clues from the genome would be extremely valuable and we all recognize that any individual study only going to be able to take us a small step of the way there, given the past decade of experience of human genetics with all flavors,” (Anon 2020b). The initiative follows the rationale at heart of a dominant statistical methodology, genome-wide association studies (GWAS): that if you collect phenotypes and genotypes from as many people as possible, correlations will arise between both common genetic variants and common outcomes, as well as between rare variants and rare outcomes (Ellinghouse et. al. 2020). Projects such as CHGI are premised on a quasi-deterministic logic that reifies the idea that understanding genetic variation can explain health disparities and diverts resources from research into the structural, social, environmental, and ultimately fundamental causes of disease (Link and Phelan 1995; Phelan, Link, and Tehranifar 2010). I return to this example in the following section to unpack CHGI’s framing as a public health surveillance project.
On the other hand, private genomics firms have set up their own COVID-19 testing and research. These commercial entities aim to strengthen their position as credentialed sources of expert knowledge and valuable data by blurring the distinction between consumer and research subjects. For example, Alphabet Inc’s life sciences research arm Verily, has aligned their longitudinal cohort study, Project Baseline, with the need for pandemic response (Arges et al. 2020). Individuals who take advantage of Verily’s free COVID-19 testing across 15 U.S. states are invited to enroll in the project, which compiles biological, health, and socio-behavioral profiles for participants and creates a pool for future clinical trials. Similarly, direct to consumer genetics companies Ancestry.com, Helix, and 23andMe are conducting their own studies. 23andMe has recontacted its customers several times to invite them to participate in their COVID-19 study. 23andMe successfully recruited more than half a million individuals and over 10,000 additional participants outside of their customer base who had been hospitalized as a result of COVID-19. As 23andMe explains on its recruitment site, “If you decide to participate, not only will you have the opportunity to advance Coronavirus research, you will also be joining our main research program, which currently has 7 million+ research participants and has generated more than 150 peer-reviewed publications. You will also receive access to 150+ personalized genetic reports online from 23andMe about your ancestry, traits and health,” (23andMe n.d.). As explained to potential 23andMe customers, the benefits of participation included free consumer products and self-knowledge: “[You will] learn about yourself through the 23andMe® Health+Ancestry Service at no cost. You will receive personalized reports on your health, traits and ancestry,” (ibid.). In this way, the production of a biopolitical subject is further normalized across the market.
The normative implications of participation in research were similarly expressed by Ancestry.com. In its invitation to existing customers to participate in its COVID study, the Chief Scientific Officer of Ancestry.com, Dr. Catherine Ball, explained “Ancestry is the world’s largest consumer genomics network with more than 16 million members. We are optimistic that our highly engaged community will help accelerate research at a time when speed is so very important. We are honored to be able to create an opportunity for millions of people to contribute to research in a way that can be amplified to benefit millions more,” (Anon 2020a). Indeed, the urgency of the pandemic accelerated the recruitment of participants for similar studies across the board, leading to the ubiquity of biomedical research encounters for millions of research-subjects-in-waiting. All these companies made their data available through CHGI.
Reporting by the Chicago Tribune points to differing public attitudes regarding these efforts: On the one hand, some folks see this favorably. When asked about their view, one 23andMe customer described, “I would participate because I’m interested from the point of view that I have asthma and my mother had asthma,” she said. “I’m concerned about being reinfected, so I would participate,” (quoted in Rockett 2020). Another, however, points to a hesitance towards relying on private firms for these public health needs, “There’s a cultural implication especially around people of color because we’ve been tested on since America has become America, […] so there is a historical context, too, so no. You’re not just going to take my stuff and test. It just starts to get a little bit too Big Brother,” (Rockett 2020).
Public Health Surveillance or Genomics Research?
The invocation of the metaphor of Big Brother here is not unfounded. Is the data architecture needed to fulfill the promise of personalized medicine a form of surveillance? Definitely. The Centers for Disease Control (CDC) define public health surveillance as “the ongoing, systematic collection, analysis, and interpretation of health-related data essential to planning, implementation, and evaluation of public health practice,” (CDC 2020). In the 1990s, sociologist David Armstrong described the rise of ‘surveillance medicine,’ a shift in the direction of the clinical gaze, from a focus on the interior of the individual body to the collective body and its environment (Armstrong 1995). While the tendency to ascribe causal significance to molecular and genetic phenomena also grew in the decades to come (Duster 1996; Lippman 1991; Rose 2007), population-based studies were instrumental, counter-intuitively, to the growth of the movement towards personalized medicine. The expansion of biomedical technologies and access to health information has also strengthened the normativity of an internalized medical surveillance of the self (Earle et al. 2009; Epstein and Timmermans 2021). The public health response to the pandemic has largely amplified these trends and has extended the cultural significance of medical surveillance (French and Monahan 2020).
In well-coordinated and centralized countries, those with strong state institutions and durable social welfare programs, like China, Germany, the United Kingdom, or Singapore, public health surveillance has been instrumental in the management of the COVID-19 pandemic. Being able to connect patient information from the National Health Service (NHS) and the UK Biobank has given health officials in the UK the information needed to track the spread of COVID-19 and identify risk factors for disease severity. For countries with poorly coordinated and disparate health systems, like the United States, success has varied. Because different states report their COVID-19 data differently it has been challenging for researchers to arrive at accurate data about where cases are happening (Galaitsi et al. 2021), and what patient outcomes are in both short and long-term timelines (Rando et al. 2021). One recent effort by the All of Us Research Program, the U.S. NIH-led effort to collect and study biological and medical data from American citizens, has made strides to replicate the public health efforts in the UK. They plan to trace the exposure to COVID-19 among All of Us participants through antibody testing, surveying the health outcomes of its participants via online surveys, and collecting recent health records for its participants.
Whether a particular effort to center patients’ genomic data is seen as public health surveillance or biomedical research has implications for the regulatory positioning of that work. In effect, the coupling of pandemic care response and research imports the social contract of citizenship into a biomedical research setting. This has meaningful implications for the bioethics of such projects. As the CHGI interprets it, “Many of these activities would be considered public health surveillance vs being research and do not require review by an IRB, nor informed consent. This includes genetics studies, as this was specifically considered when the new Common Rule was adopted in 2018. This does not mean that participants do not have to be provided the same information on the study goals, procedures, and study risks, but it does not have to go through IRB review, and signed informed consent is not required,” (CHGI Website 2020). But little is known about how these samples might be used in the future, so even relying on broad consent might not be warranted given histories of data misuse. Even in situations where there is local oversight, anonymization, and consent the spread of health data across organizational and national boundaries compounds the risks to participants due to national regulatory asymmetries.
The Politics of Pandemic Research
How can we understand this relaxation of requirements from a sociological perspective? What are the implications of pandemic biopolitics for communities? Research in political sociology, and the insights of Foucault in particular, would claim that a nation’s population already tacitly consented to surveillance by the state–though certainly not in an informed way–as the state is tasked with caring for the population within its borders (Dumbrava 2017, French and Monahan 2020, Lyon 2006). This is the case, for example, with surveillance and tracking with smartphones and by analyzing user-generated data (Benjamin 2019, Pallitto 2020). This form of pastoral power is at the heart of Michel Foucault’s claims about the genealogy of modern medicine and the management of epidemics by the state (Foucault 1963). As Foucault describes, the jurisdictions of social control become blurred during a pandemic, requiring, “a medical consciousness whose constant task would be to provide information, supervision, and constraint, all of which ‘relate as much to the police as to field of medicine proper,’” (ibid. p.26). For Foucault, the expansion of biomedical research and its coupling to medical care in the wake of the pandemic follows a historical pattern where, “[during epidemics], medical space can coincide with social space, or, rather, traverse it and wholly penetrate it. One began to conceive of a generalized presence of doctors whose intersecting gazes form a network and exercise at every point in space, and at every moment in time, a constant, mobile, differentiated supervision,” (ibid. p.31). At an ideological and cultural level, that is why public health surveillance can go on without the need for an IRB (French and Smith 2013, Weldon 2004). By participating in a nation as a citizen, we tacitly consent to the legitimate use of the scientific and medical gaze by government institutions, and in neoliberal states, by private firms. As Foucault continues in his analysis, epidemics lead to a “generalized medical consciousness, diffused in space and time, open and mobile, linked to each individual existence, as well as to the collective life of the nation,” (Foucault 1963, p.31).
This is a salient feature of the current biopolitical moment that becomes concretized through individual experience. With over 836 million viral tests administered by public and private laboratories in the United States as of March 26th, 2022 (Hasell et. al. 2020), getting swabbed, swabbing yourself, or spitting into a cup is becoming more commonplace. This, in effect, has led to a cultural shift whereby giving one’s biological tissue has become increasingly normative. While this affords researchers with the crucial data needed to develop therapeutics, prevent the spread of infection, and, in theory, return actionable information to individuals who may be at greater risk of severe illness if they get infected, the biopolitical order entailed has left the door open for commercial research entities.
Additionally, at the heart of genetic research is the idea that variation in individuals’ genomes explains variation in health outcomes. With the sustained heterogeneity of COVID-19 illness severity, this seems like a sensible approach. Still, over-reliance on genomics perpetuates what sociologist Troy Duster calls the prism of heritability, the durable tendency of modern societies to focus on molecular and genetic causes of health, behavior, and identity (Duster 1990). Privileging molecular causes can obscure the complex intersections of biology and social structures. It additionally localizes the burden of disease to the individual by narrowing the causal gaze of epidemiology to one’s genome. This is alarming given that many of the CDC’s current list of underlying medical conditions that exacerbate COVID-19 outcomes have complex social etiologies, including asthma, diabetes, heart disease, hypertension, obesity, and smoking.
This further entails a molecularization and essentialization of COVID-19 health disparities by race, ethnicity, and class, where differences in COVID-19 outcomes due to systemic racism may be supplanted by genetic explanations. The likelihood of such conflation is high given recent research that has found that exposure to information about COVID-19 racial disparities, ironically, reduces fear of COVID-19, reduces empathy for those vulnerable to COVID-19, and decreases support for safety precautions among U.S. white residents (Skinner-Dorkenoo et al. 2022). The persistent racialization of and attacks on Asian American communities exemplifies how the status of different biological citizens can be threatened in the wake of the pandemic and the ease with which essentialist understandings of race, biology, health, and disease can harm people.
As biomedical research continues through new waves and phases of pandemic and post-pandemic response, social scientists are well positioned to not just characterize this biopolitical order (Epstein 2020), but to also draw out alternative ways of organizing health research and care and push against path-dependent processes that may harm communities in the future or exacerbate health inequities. We must similarly interrogate the constitution of new biopolitical subjects and identify frameworks for political participation as biological citizens. For example, by shifting from thinking of citizenship as a set of rights or status towards a conception of citizenship as a claim-making process (Bloemraad 2017) we may draw attention to more the normative dimensions of the relationship between institutions, states, and individuals. We can then begin to apply these insights to the pandemic and ask: how is biological citizenship a specific process of claims-making about health, the body, community wellness? Who is making claims about how specific communities should act in order to receive care? What forms of surveillance can be claimed as legitimate? What claims about access and equity need to be made to combat the reproduction of health inequality between groups? How are the claims of different individuals (parents, people with disabilities, teachers, students, service workers, business owners, corporate elites, etc.) to the state regarding pandemic restrictions and guidelines being prioritized? How are scientists making their own claims, about the value of biomedical research and about their role in addressing the social problems underlying the pandemic?
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