Abstract
The genome has become a crucial component in precision medicine aimed at tailoring medical treatment to the individual. To the extent that social science studies of genomics have explored questions related to the individual, these studies have focused on how the governance regarding genomes facilitates individuals’ rights, choices, and responsibilities. By contrast, we approach genomic governance by investigating how enactments of the person in precision medicine actualize practices of reciprocity and belonging in a national collective. Based on document analysis and ethnographic fieldwork in Denmark, we show that genomes are treated simultaneously as digital representations of individuals, social resources for a welfare state population, and emblems of public trust. By drawing on classical and contemporary anthropological theories of personhood, we unfold how Danish precision medicine prescribes a moral continuity between person, state, and territory. We argue that Danish precision medicine revitalizes a national politics of belonging and generates socio-spatial orientations through which the “me” of the person shares origin and place with the “we” of the welfare state.
In one of our first conversations with a clinical geneticist in Denmark in 2018, she enthusiastically said that “the genome is the entire recipe.” In the context of our conversation about children with rare diseases, the “entire recipe” referred to the genealogical components that shape an individual’s physical appearance, traits, cognition, and personality. In other words, the geneticist presented the genome—the sum of an individual’s DNA—as both constituting and representing the person. To her and her colleagues, the newest data-driven technologies designed to tailor diagnosis, treatment, and prevention to the clinical and genetic features of the individual—widely referred to as “precision medicine”—represented promising possibilities for individuals and their families to have more precise diagnoses. A few weeks later, as we moved from this clinical context into Danish scientific seminars and public discussions of precision medicine, citizens’ genomes were also a hot topic: here, political stakeholders and scientists were talking about the Danish biobanks and national registers as a “gold mine” and a “golden egg.” In this context, the enthusiasm concerned genomic data and health data generated from citizens’ interactions with public healthcare. This collection of data made up a social asset (gold mine) and magical force (golden egg) that promised to boost both public health and life science investments (Tupasela 2021). The parallel understandings of genomes as both digital representations of persons and collective resources go to the heart of this article’s exploration of how Danish precision medicine discussions and initiatives actualize questions about the person.
The category of personhood has not gained much attention in social studies of genomics. By contrast, seminal frameworks of “biosociality” (Rabinow 1996), “genetic citizenship” (Heath, Rapp, and Taussig 2007), and “biological citizenship” (Rose and Novas 2005) have explored how knowledge about genetic traits and susceptibilities engender biopolitical subjectivity. These studies point to the empowering potential of genomics as people engage in activism related to specific genetic traits and fight for entitlements and rights (e.g., Gibbon and Novas 2007; Navon 2019; Palsson and Prainsack 2011). In addition, important scholarship has shown how genomics may not only empower individuals but also exclude them from citizenship and civic rights in the field of migration (e.g., Helen 2014; Heinemann and Lemke 2014). While we take inspiration from this literature on genetic and biological citizenship, we also find that its focus on rights and entitlements overlooks how genomics exposes and shapes ideas and practices of the person. To remedy this absence, we draw on contemporary and classical anthropological literature on personhood, seeking to understand how ideas and practices of the person embody relationships to collectives through reciprocity and belonging. The concept of reciprocity has a long history in anthropology and refers to practices of creating a moral community through mutual exchanges (Mauss 1985). The concept of belonging holds many meanings. Here, we highlight the power dynamics of constructing boundaries around a community and/or national population (Gammeltoft 2014) or what Nira Yuval-Davis has called the “politics of belonging” (Yuval-Davis 2011; Zenker 2021). Taking an interest in the dual concept of “belonging”—both a personal possession and the state of being part of the greater whole (Zenker 2021; Pinel and Svendsen 2021)—we examine how these two concepts intertwine in the governance of genomes, unfolding how the linking of genomes to persons, and the constituting of them as personal possessions, mobilizes a person-state-territory politics of belonging.
Revisiting Personhood
In his famous essay on “the category of the person,” the anthropologist Marcel Mauss (1985 [1938]) approaches the person as a being that comes about as a result of collective social action. His basic claim is that practices of personhood imply ideas about the origin of individual and collective and about membership of the collective. Mauss draws attention to the agency of nonhuman elements, for example, ancestral spirits, which play a part in the collective action of the making up of human persons. Later, Meyer Fortes’s studies of the Tallensi in West Africa described how crocodiles living close to a Tallensi community are treated as quasi-persons, “the incarnation of important clan ancestors,” which, moreover, hold ancestral powers (Fortes 2009, 249). Here, crocodiles not only appear as person-like mystical agencies, they also represent the origin of Tallensi society and embody its moral order. In what follows, Mauss and Fortes’s attention to the relationship between mystical agencies, human persons, and the collective helps us uncover how genomes in Danish national precision medicine bring forth ideas about the person as citizen: what we term the “citizen-person.”
We are certainly not the first to show that the life sciences bring into the world new entities—cell lines, organs, animal models—actualizing the category of the person (e.g., Kaufman and Morgan 2005; Lock 2002; Sharp 2019). Yet, what comes to the fore in our account is not only that genomes exist in a bond of life with the individual but also that they bring to the fore relationships with the collective. Drawing on Fortes, we argue that in the Danish discussions and regulations of citizens’ genomes, genomes appear as person-like entities with a certain kind of mystical agency relating to the origin of the individual and collective. The genome in state care is both “the entire recipe” of the citizen-person and a “recipe” of reciprocal state–citizen relationships, as the genomes have their origin in the Danish universal healthcare system offering care to its residents from birth to death. Approaching the Danish governance of genomes not in terms of citizen rights and responsibilities, but as a practice of citizen-personhood, enables us to track how the Danish legislative process addresses the citizen-person as holding the freedom to control and possess its own genome while unambiguously belonging in the state’s domain.
The Study
In the period between September 2017 and May 2021, we investigated the introduction of precision medicine into Danish healthcare as part of a larger study of the ethics, law, and organization of Danish precision medicine led by the first author. Our study has involved document analysis of policies and public discussions as well as ethnographic fieldwork involving participation in more than thirty meetings and seminars of Danish precision medicine projects and committees and numerous visits to sites of precision medicine research and clinical practices. In addition, we have interviewed twenty-seven researchers and clinicians working in this field. As part of this work, we became research partners in the precision medicine project TRANSLATE (2020-2025). Our aim has been to investigate how precision medicine becomes a material phenomenon through interactions between media representations, legislative processes, and the daily practices of patients, clinicians, administrators, and researchers. Accordingly, in this paper, we move eclectically between public discussions, legislation, and the actions and experiences of TRANSLATE researchers, unfolding how the citizen-person is practiced across these interrelated and intersecting domains.
In what follows, we first introduce the Danish setting and national precision medicine initiatives. Second, we investigate the way the public debate on precision medicine raised concerns about the centralized and state-initiated storage of genomes. Third, we highlight how negotiations about genomes as collective resources in state storage revealed ideas about the citizen-person as standing in a reciprocal relationship with state institutions and as being “at home” in state institutions. Fourth, we examine challenges related to state institutions’ approval of TRANSLATE’s dataflow and investigate how these challenges articulated a politics of belonging that placed genomes as personal possessions in welfare state institutions on national territory.
Precision Medicine in a Welfare State
In Denmark, public healthcare is universal and covers almost all healthcare services throughout a lifetime. In general, people have trust in state institutions and see tax-financed healthcare as the best way of securing a fair system and good health for everyone, based on principles of solidarity. From the very establishment of the Nordic welfare states in the 1930s, there has been a close relationship between national data collection and the development and continuous evaluation and adjustment of welfare policies (Cool 2016, 280). Today, Denmark is a digital front-runner, operating a universal registration of all residents in digital infrastructures (Hoeyer 2020). Within an hour of birth, every infant in Denmark receives a bracelet with the newborn’s ten-digit civil registration number (CPR) recorded in the digitized CPR registry. Run by the Ministry for Economic Affairs and the Interior, the CPR registry contains basic information (name, address, birth, citizenship, church membership, parentage, and marital status) on persons who have been, or are currently, residing in Denmark. The bracelet on the infant’s arm includes the child in a population of registered residents before the child is formally given a name by his or her parents. We may see the bracelet as embodying the infant’s first belonging to the welfare state and its becoming a citizen-person.
People who do not enter Denmark through birthing but rather through national points of entry, and who plan to stay for more than three months, are also required to have a CPR. As it says on the City of Copenhagen’s home page, all residents, even temporary ones, will need a CPR “to open a bank account, access [their] health insurance, borrow books from the library, pay taxes, receive salary, and so on” (https://international.kk.dk/artikel/cpr-number). The CPR facilitates every resident’s interaction with public institutions (e.g., healthcare, education, social services) and also with some private institutions (e.g., as employees; Nordfalk and Hoeyer 2020, 1). Throughout a lifetime, all data generated in connection to these interactions are recorded using the traceable CPR.
According to Danish health legislation, consent to treatment presumes consent to registration and banking of health data; a task which health institutions (e.g., hospitals) are obliged to carry out. Health data are made available for health authorities as part of quality assessments and planning; for the treating physicians as part of providing patient treatment; and for researchers, based on ethical approvals. As is the case in the other Nordic countries (Cool 2016; Tarkkala and Tupasela 2018), data from Danish public registries and the country’s high-quality biobanks constitute a rich and internationally renowned source for research (Tupasela 2021; Pinel and Svendsen 2021). This resource was the “golden egg” mentioned above and discussed in seminars on precision medicine.
In 2015, the Danish Regions governing Danish healthcare, followed up in 2016 by the Danish government, announced a national strategy on precision medicine (Danish Regions 2015; Danish Government 2016). The flagship of this strategy was the establishment of the National Genome Center (NGC) as an infrastructure for storing residents’ genomes and for using them “For the Benefit of Patients,” as the government strategy was named. The idea was to combine genomic data with data from the comprehensive Danish registries to reach a data-intensive characterization of individuals by comparing data from them with data points from thousands of other individuals. With health data and genomes from citizens stored in national registries, the strategies saw people and the state as joined in a common endeavor of enabling genomic and health data from the Danish population to improve public health (Danish Government 2016), boost Danish life science, and attract international pharma companies to run studies in Denmark (Danish Regions 2015). Commenting on the strategy in 2017, the director of all Danish hospitals expressed his optimistic anticipation by saying, “When patients become healthy more quickly, they will return more quickly to the labor market. What is best for the citizen, is best for society. It is a win-win [situation]” (http://www.regioner.dk/sundhed/medicin/personlig-medicin). To reach this “win-win situation,” the national strategy depicted the NGC as a central gateway through which public and private stakeholders access data and collaborate in the service of citizens’ health, biotech companies, and state budgets.
Some changes to Danish health legislation provided a crucial step in establishing the NGC as the core of the new data infrastructure. In fall 2017, the government drafted an amendment stating that sequencing a patient’s genome could take place as part of treatment without written consent and that the genome would be automatically registered in the NGC. This model treated genomic analysis as equivalent to any other medical test only requiring oral consent from the patient. The law-making process provoked an extraordinary number of critical responses (seventy-seven questions) from organizations and politicians (Cathaoir 2019) and an intense public debate in Danish news media through most of 2018 (Skovgaard and Hoeyer 2022). Given that significant amounts of CPR-based data are seamlessly collected and mobilized in welfare state policies, and that this appears unproblematic to Danes, we were curious about what the collection and storing of genomes in the NGC evoked that seemed so worrying for people. We suggest that at the heart of the controversy was the question of what it means to be a citizen-person in Denmark.
Genomes as Individual Possessions
In December 2017, the front page of Ekstra Bladet, a national tabloid newspaper, announced: “The state will take your DNA without asking you for permission.” During the following six months in Denmark, a wide spectrum of newspapers, television and radio programs, and voices on social media debated the establishment of the NGC. The article from Ekstra Bladet described the genome as “the code to your existence…the key to your most personal information and the deepest secrets in your DNA” (Jensen 2017). The article contained an interview with a central spokesperson from the Danish Society for General Practitioners. Together with a colleague, he had authored a feature article in the national newspaper Politiken a few weeks earlier. As they wrote: Imagine that the state wanted to collect the key to the home of every Dane without asking them…The state tells us that it will take good care of the keys, but it doesn’t tell us how.… In the NGC, the DNA will be pooled with personal information from other Danish registries in one big super register. For many people, such pooling is uncomfortable if they have not been asked [about it]. The right to privacy is a human right regardless of the Danish state’s incentives to register just about any kind of digital data. (Beich and Kristiansen 2017)
In the scientific field itself, and in social science, there has been a proliferation of conceptual terms—“data double” (Elmer 2003), “digital twin” (Boschert and Rosen 2016), and “data phantom” (Ebeling 2016)—to describe how a disembodied accumulation of data not only passively represents the person but is also invested with personhood and, thereby a life, and will of its own that might escape the control of the person in unsettling ways. This fear of genomes “living” on their own, unmoored from the embodied persons they represent, was also present in the Danish discussions. A front-page article in Politiken described the NGC’s central storing of genomes as “high risk,” suggesting state authorities’ pooling of genomic and register data might be used for “dark purposes” (Kjeldtoft and Straka 2018). The public discussions drew in a register-based research project which was already running and for which Danish authorities had granted Danish researchers access to thousands of blood samples, based on register data among this population, without asking the people from whom the samples originated. As part of this project, 86,000 anonymized Danish blood samples had travelled across the Atlantic to a US company for whole genome sequencing (WGS). One citizen, who assumed her blood sample was among the transferred samples, said, “The problem is that I don’t know what they are using my genes for” (Kjeldtoft 2018). We observed in these articles and discussions—as in the case of this particular citizen—the genome as a possession of the individual which escaped the control of the individual when it became mobilized in transnational precision medicine.
The concepts of “double,” “twin,” and “phantom” focus on the relationship between the (digital) substitute and the “original” embodied person (Svendsen 2022). Similarly, we may see the articulation of “my genes” in the Danish debate as reflecting the Western notion of the person as independent individual exercising “atomistic autonomy” (Prainsack 2018, 23), now under threat from the establishment of the NGC. In her study of embryo collection in the early twentieth century, Lynn Morgan (2009) describes how embryos, in being collected, gained identity as precious autonomous objects, and she points to the importance of unearthing the “relationships and exchanges” which brought them into being (p. 16). These relationships involve the women who carried the embryos, the anatomists who bottled them, and the scientists who made claims about them. In the Danish discussions, genomes’ relationships and exchanges were not just for the social scientist to unearth and discuss; they were at the very center of the public discussions. In other words, the understanding of genomes circulating inside or outside the country was continuously related to the individuals from which they originated, the trust-based encounters between citizens and state-employed doctors in which they were to be used, and the obligations of the state to secure trust in its custody of genomes in a transnational data economy. As we show next, the possibility that the morally sacrosanct DNA might not be adequately protected not only concerned the individual but addressed the character, governance, and boundaries of the institutional spaces citizens share with the state.
Genomes in State Care
In the Danish public discussions about the establishment of the NGC, the many organizations and individuals raising concerns about the NGC did not argue for citizens to be able to keep their genomes on their own computers. In the metaphorical language of “door-keys” and “home,” those who joined these debates widely approved of genomes’ being sequenced and thus brought into view and utility through state institutions, and agreed that the state was responsible for the “key” to the “home.” In this way, the concept of the genome as a possession of the citizen-person was intertwined with the genome as originating in a particular state–citizen relationship, due to the fact that genomes came into being as digital data through state-financed healthcare institutions and registration practices, and in accumulated form constituted a collective resource for precision medicine (Pinel and Svendsen 2021, 10). In other words, genomes as personal digital representations embodied persons’ relationships with the welfare state. Consequently, the anticipated pooling of genomes and health data came to embody a past, present, and future of comprehensive registration of citizens’ interactions with state institutions (traceable through their CPR).
In Denmark, as is the case in other Scandinavian countries, state institutions—kindergartens, schools, and healthcare services—are viewed as institutions which facilitate the development of individuals’ becoming independent persons able to think, enact their free will, engage in society, and contribute to it (Pedersen 2018, 95). That is, “the institutional arrangements of Scandinavian welfare states are both individualizing and at the same time encourag[ing of] the institutionalization of highly collectivist, ‘one-size-fits-all’ policy solutions” (Bendixsen et al. 2018, 13). The CPR on the bracelet of every newborn citizen is a one-size-fits-all policy solution attaching the new individual to welfare state institutions. In this welfare state ideology, this attachment provides to the citizen-person the possibility of becoming free, healthy and equal, and of holding an entitlement to their own chosen way of living within the framework of welfare state redistributive politics and values (Pedersen 2018, 96). The critique of the national central storage of DNA, and its pooling of DNA with other data sources without asking the citizens involved, depicted state institutions as threatening this kind of citizen-personhood. The state was no longer depicted as facilitating citizens’ independence and possibilities, but, on the contrary, as a force that risked obstructing them.
Some of the health professionals we talked to were unhappy about the fact that the whole genome—not only pieces of it—was stored in one place. As state-employed clinicians, they firmly embraced the Danish system of accessible patient information through digital infrastructures, and they were excited about making greater use of genetic analysis in their work, yet they questioned the central storing of DNA information. As one of them said, “with these data, you can do whatever you want,” thus alluding to the unbounded potential of the genome, both for the individual (as recipe) and for the state (as golden egg). Our conversations with these clinicians reflected their concerns related to security (how should citizens’ genomic data be stored?), privacy and self-determination (who would control access to genomes?), and purpose (what should genomes be used for?); concerns which were also present in the feature article authored by the spokespersons from the Danish Society for General Practitioners (e.g., “pooling is uncomfortable if they [citizens] have not been asked”) and the imagined “dark purposes” of central storage. In this way, the discussion of the genome as a possession of the citizen-person was interwoven with discussions of how the state would protect this possession, and whether or not the automatic storage and use of the genome constituted an illegitimate act. Consequently, the concerns pertain to both individual possessions—security, privacy, and individual consent—and to collective endeavors, such as whether or not the resource will benefit the collective (see also Skovgaard and Hoeyer 2022).
In his essay on personhood among the Tallensi, Fortes describes a crisis in a local community he observed in 1971. One of the crocodiles living in a particular sacred pool had been killed during the night. Fortes (2009, 256) tells his readers that these crocodiles are “associated with the particular collective person, that is, the clan whose dead elders rise up again (as [the] Tallensi say) in these crocodiles.” Faced with the spilling of blood and death of the animal, the villagers expected misadventures to fall on the whole community and organized a divination session. The illegal act of killing the crocodile touched the very constitution of society and was anticipated to provoke disasters. Fortes’s attention to the intertwinement of mystical crocodile agency and (clan) collectivity in the living space of the “sacred pool” may help us understand how the origin of the collective is also at stake in the Danish case. Here, the genome becomes an emblem of trust in state–citizen reciprocity. If the state does not ask citizens about how their genomes should be used and cared for, this trust in public institutions risks being “killed,” causing a crisis similar to the “misadventures” the Tallensi villagers expect to descend upon the whole community following the killing of the crocodile.
One would think that a tabloid newspaper’s front page is quickly forgotten. This did not happen in this case. Sitting in on meetings in committees overseeing the implementation of the national strategy of precision medicine and at public seminars about precision medicine, we learned that medical researchers and clinicians kept coming back to the accusation of the “state taking your DNA” which was often referred to as “stealing DNA.” The researchers and clinicians were worried about the many critical voices from highly esteemed organizations and argued in favor of seeing the banking of genomes rooted in thoroughly trustful relationships between citizens and the state. To them, the precision medicine ambition of enhancing public health depended on complete data collections and international collaborations, and thus they argued in favor of the automatic banking of data in national and highly secure supercomputers—a “sacred pool”—operated by the NGC. An early response to the accusation of the state’s wrongful act of “taking DNA” from citizens was a feature article authored by eleven leading Danish medical experts. They wrote: Among researchers across the world, Denmark is known for its unique registry research studies based on our collection of health data in databases and electronic patient journals in a publicly financed healthcare system, in which citizens are traced from cradle to grave. Access, which relies on permission from data protection agencies and ethics committees, makes it possible to contribute a great deal of usable information connecting genomic variation to life course and diseases… We run the risk of losing our leading position within medical research and treatment if we do not participate in the revolution of personalized medicine in the coming years. We have a huge pharmaceutical industry, which is multinational and which locates its studies where patients are most fully described. So far, this place has been Denmark, but that can easily change. (Bojesen et al. 2017)
In response to the many critical statements and accusations about the state’s total power over the storing and use of genomic data, a new legal amendment was adopted. The amendment accommodated some of the criticism by introducing written consent to genomic analysis and thus to the banking of data in the NGC. The amendment also made it mandatory to inform patients about how to opt out of Danish register-based research. As such, the amendment incorporated a respect for individual decision-making into an arrangement which first and foremost secured genomes in state institutions, thus tethering them to collective interests. The introduction of written consent and opt-out procedures together highlighted the genome as a possession of the citizen, yet one which can only reside in the “sacred pool” of the collective, thus being available for transformation into a common resource.
A white paper accompanied the final amendment. This document narrowed the purposes of use of genomic data by stating that genomic information cannot be accessed by employers, insurance companies, or social services. According to the white paper, the establishment of the NGC ensured residents’ genomes remained on Danish territory, and this brought an end to the transferring of biological samples and data out of the country as had happened in the research project mentioned in the public debate. By presenting employers, insurance companies, and transnational life science corporations as possible intruders from which citizens need protection, the white paper changed the rhetoric of “the state stealing your DNA” to the state protecting your DNA. From this perspective, the Danish welfare state ideology of securing individuals’ autonomy and freedom through (somewhat paradoxically) their attachment to public institutions was reaffirmed.
In this way, the public discussions intensified the understanding of genomes as being paired with the individual and generated strong explicit statements in law and policy papers that the “sacred pool” of state storage was the safest protector of personal possessions (Jensen and Svendsen 2021, 7-8). In another paradox, the law-making efforts to meet the criticism by respecting the genome as the citizen’s personal and private possession happened to empower the state institutions established to store and care for it. The final amendment transformed the NGC from a “center” under the Ministry of Health to a government “agency” (styrelse) operating the national storage of genomes and providing counsel to the Government.
A National Politics of Belonging
Sitting in on meetings in the NGC in 2019, we were told that the physical weight of the heavy material used to fortify the data center of the NGC was so extreme that there were only two trucks in all of Europe that could bring it from the production site to the data center. This heavy construction and the legal framework paving its way demonstrated that proper care for genomes implied fencing them in—materially and legally—in the safe “home” of the state. In this section, we pursue this spatial imagination of home and how it relates to the physical location of sequencers and the flow of data. We explore how the implementation project TRANSLATE brought to the fore negotiations about how the citizen-person is related to territory and how the state and citizen-person are imagined to share spaces.
In 2020, the state-financed Innovation Fund Denmark granted 30 million DKK to a five-year combined research and clinical project aiming to implement WGS in diabetes care in Denmark. TRANSLATE was the first project combining research and clinical treatment to use the NGC infrastructure. The grant enabled 6,500 patients with type-2 diabetes or gestational diabetes to be offered WGS to identify patients who carried genetic variants that were clinically actionable in diabetes care. To reach this aspired end, the dataflow involved the transfer of blood samples from diabetes patients in a clinical setting to the sequencing giant Beijing Genomics Institute (BGI) Europe located in Copenhagen. At BGI Europe, a sequencing machine bought by TRANSLATE, but operated by BGI, was to transform the blood samples into data that would then be transferred to the NGC. Here, a private Danish bioinformatics company, Intomics, was to access the data, analyze them for specific variations, and develop a software platform communicating results to clinicians and supporting treatment decisions.
In August 2020, a few months after the launch of the project, the NGC partner in TRANSLATE informed the project’s partners that the Ministry of Health was critically scrutinizing ministerial institutions’ collaborations with BGI. As she phrased it at the meeting, “the Ministry is looking into NGC’s collaboration with BGI via TRANSLATE” which, she explained, meant that the Ministry wanted additional information and assurance that data security at BGI adhered to legislative demands. A few weeks earlier, Danish investigative media had reported on the possible role of BGI in developing DNA technologies to be used for racial profiling against a Muslim minority, the Uighurs, in western China. In an interview in a national newspaper, the Minister for Research said, “in an isolated perspective, [research] projects may look fine, but when you place them in a larger context, they may have negative consequences” which, the Minister reported, is what happens when “we as a country come to support things we don’t want to support” (Seidelin and Broberg 2020).
Shortly afterward, the TRANSLATE steering committee received a letter from the NGC. The letter opened by mentioning the concern about Danish institutions’ unintentionally supporting harmful activities, yet the letter did not say anything about the violations of human rights which newspaper articles accused BGI technology and expertise of being involved in. Instead, the letter emphasized the unique character of genetic information and the importance of TRANSLATE meeting all regulative demands. It said, “genetic information is sensitive personal information” and the Ministry found that “discomfort [on the part of patients] is an issue if this information is handed over or stored outside the country or is lodged with foreign actors without the person (i.e., the individual whose DNA is involved) knowing about it.” The letter also said, “the establishment of the national infrastructure [for precision medicine], of which NGC is a central part, aims to ensure that genetic information from Danish citizens will not be processed and stored outside the country if this is not strictly required.” The letter ended by the NGC underlining the expectation that “data collected in TRANSLATE will not leave Denmark.” With this letter, the minister’s initial concern about the mobilization of the Danish genomic resource in transnational relations was turned into a concern about citizens’ feelings about the possible circulation of their “sensitive personal information.” We may see the letter as expressing what the NGC found most urgent in this moment of establishing the new infrastructure to protect public trust by assuring individuals that their genomes would remain in Danish institutions on Danish territory.
While the white paper articulating the foundation of the NGC pointed to the importance of data security in the upholding of public trust, the letter from the NGC to the TRANSLATE steering committee exemplified how to do this. It spelled out a moral responsibility to prohibit genomes in state storage from leaving the country. Thus, the letter depicted the citizen-person and the state as belonging in the same “home” and expressed the reciprocal relationship between them: the citizen-person lets their genome enter the “sacred pool” and the state has responsibility for treating the genome respectfully by preventing it from becoming a “virtual migrant” (Aneesh 2006, in Palsson and Prainsack 2011, 266) performing work in a transnational bioeconomy beyond the control of individuals and state. This blocking of genomes from leaving Denmark pictures the welfare state as the entity which ensures the citizen-person’s freedom and well-being by protecting their genomes from being appropriated by transnational forces (Jensen and Svendsen 2021, 11). In response to the letter from the NGC, the TRANSLATE group documented the project’s strong compliance with all relevant legislation. However, a few months after having fended off the attention from the Ministry, new challenges emerged. At a meeting with the local administrators in the Capital Region managing all healthcare activities in this part of Denmark, the case manager who was to approve TRANSLATE’s dataflow questioned BGI’s involvement. Where the TRANSLATE group saw project activities as belonging in the legal domain of “clinic,” the case manager in the Capital Region stated that TRANSLATE was to be classified as “research,” rationalizing this through the fact that the sequencing of genomes initiated by TRANSLATE was to be conducted within a limited period of five years and that BGI was not part of data flows in the Danish healthcare services. Interestingly, the Danish company Intomics is also a private actor and not part of the Danish health services, yet the case manager did not have reservations about their involvement. Thus, the private Chinese company (BGI)—located in Denmark, only 500 meters from the University Hospital in central Copenhagen—was designated as not belonging in Danish healthcare, whereas the private Danish company (Intomics)—also located in Denmark, 10 kilometers from Copenhagen—was included in the domain of Danish healthcare services.
We see demarcations such as this as expressing a politics of belonging (Yuval-Davis 2011), delineating boundaries around a national collective which includes citizens, public institutions, and private Danish companies but excluding a foreign company located in Danish territory. Exclusion is central to any governance of a digital resource as it must be clear who has access to that resource (Prainsack 2019, 4). By excluding BGI from touching Danish genomes within the clinical domain, the response from the Capital Region enacts residents as citizen-persons who not only belong in the same “house” as the state, but who may also safely hand over the “house key” to the state as it will ensure that genomes remain “at home” and do not become attached to—and lucrative for—Chinese actors. Partly in response to these obstacles, TRANSLATE searched out possibilities for moving the BGI sequencing machine to the university. With this transfer, the transformation of blood samples to digital genomes would continue to take place on the BGI machine and be carried out by BGI partners in TRANSLATE, yet the act of sequencing would physically happen in the state institution of the university, thus bringing the data and its management into the shared “home” of citizen-person and state.
In the end, the approval of the dataflow from the Capital Region depended on approval from the National Committee on Health Research Ethics. A few months later in May 2021, this committee responded: they would approve the dataflow, conditional on TRANSLATE’s operating its activities as “research” and approaching patients enrolled in TRANSLATE not as patients, but as research subjects. This decision gave additional insights into how the shared “home” of state and citizen-person was imagined. In bioethics regulation, knowledge on persons obtained in the course of research cannot enter these persons’ clinical treatment. Yet, in the case of TRANSLATE, preventing genomic data from the project from informing care and treatment ran directly counter to the project’s ambitions to integrate—or translate—the genetic knowledge into treatment for the participating patients. In a follow-up meeting, the head of the National Committee on Health Research Ethics explained to the TRANSLATE principal investigator (PI) and his closest employees that the data protection legislation prohibiting research data on individuals from entering other institutions in the welfare state aims to protect research subjects from state surveillance. For example, the head of the committee explained that if a register-based research project documents the criminal behavior of individuals traceable through the Danish CPR system, this information is prevented from arriving in state institutions and agencies that would have an interest in acting on such information. 1 Evidently, prohibitions on where data can go do not only prevent personal data from leaving institutions designated as “Danish” as we saw in the Capital Region’s opposition to BGI. An imagined spatial buffer zone between citizen-person and state also minimizes data’s circulation within their shared “home.”
In sum, the responses from Danish authorities to TRANSLATE aimed to protect genomes by controlling their movement in a transnational data world (prohibiting genomes from leaving Denmark), keeping them among Danish actors (excluding BGI from Danish healthcare services), and regulating their travel between research and clinic (limiting research data’s entry into healthcare). We see these responses as constituting a politics of belonging, which establishes a moral continuity between citizen-person, state, and territory (cf. Pinel and Svendsen 2021). To the PI of TRANSLATE, this politics also exposed the paradox that the regulation set in place to secure individuals’ self-determination, well-being, and trust in public institutions hindered the overall objective: namely, the very ambition of enhancing individuals’ well-being through more precise diagnoses and possibilities for individuals to decide for themselves what should happen to their genomes. Similarly to the eleven authors of the feature article discussed in the previous section, he envisioned that individuals’ sense of belonging in the state would ease the integration of research and care and that a smooth transfer of information from research projects to patient trajectories would enhance trust in public healthcare. By contrast, TRANSLATE was faced with new space-traversing challenges in order to integrate research and clinical activities. To the relief of the PI and his closest colleagues, the National Committee on Health Research Ethics finally accepted that very specific information about certain genetic variations could enter patients’ clinical care: this was due to the establishment of a bridge between research and clinic being an essential element of the research project. Yet, this limited porosity between the two domains in the shared home of state and citizen-person did not permit the WGS of patients to be connected to their medical records and accessible for clinicians in the future. While a path was created for very disease-specific information to be carried across, this did not break down the walls between state and citizen-person in their shared home. In the end, the mobility of genomes was shaped by a national politics of belonging which draws citizen-person and state together and yet also upholds a spatial buffer between them.
Conclusion
The notion of the genome as a morally sacrosanct digital representation of the person was central to Danish public discussions on genomes in precision medicine. While this iconic understanding may seem familiar, the Danish public discussions and the legislative process which followed demonstrated the view, both among spokespersons and legislators, that the genome also embodied the power of public trust in state–citizen relationships. In other words, at the heart of establishing a national infrastructure of precision medicine in Denmark was the question of what it means to be a citizen-person in the Danish welfare state. To summarize, the critical voices accusing the state of “taking your DNA” saw the governance of genomes as a violation of the state–citizen relationship in a welfare state context. In response, the legislative process establishing the NGC, and the authoritative bodies’ reactions to TRANSLATE, firmly placed the citizen-person in the “home” of the state. This position depicted state and citizen-person as allied against intruding transnational forces and turned a heated debate about the state “taking your DNA” into a political rhetoric of the state protecting the citizen’s DNA—“your” DNA—from foreign intruders. Surprisingly, maybe, this national politics of belonging coexisted with the acknowledgment of the genome as a possession of the self-determinant citizen-person as articulated in public discussions about “your DNA,” and then expressed in the amendment to the law prescribing mandatory written consent to genomic analysis. The public controversies and the political answers—in the form of legislation, ministerial attention, and dataflow approval processes—simultaneously empowered the all-encompassing caring national welfare state and the vision of the self-determinant possessive individual. But do not be mistaken. This citizen-person was never seen as free-floating but as gaining independence, freedom, and well-being by unambiguously belonging in state institutions and standing in a bond of life with state institutions on national territory.
By moving across public discussions, legislation, and research practices, we have been able to follow how the meaning of the citizen-person was articulated and negotiated in Danish national genomics. Where the concept of citizenship has directed attention to the governmental practices making up enterprising, discerning, and responsible individuals, the anthropological concept of “person” invites us to follow the socio-spatial orientations through which the “me” of the person shares origin and space with the “we” of the collective. Expanding the theoretical framework of biological citizenship to include an attention to person provides a helpful analytical lens for the study of how practices of reciprocity and belonging shape what can be known, about whom, and where knowledge and data may remain or travel. Such an approach enables an integrated analysis of the overlapping and contested practices of person, science, and society.
Footnotes
Authors’ Note
All data were handled and kept according to the rules of the Danish Data Protection Agency.
Acknowledgments
The authors thank the clinical geneticists and TRANSLATE researchers for their valuable conversations and time. They thank Tyler Zoanni, Clemence Pinel, Anne Cathrine Baun Thuesen, and the MeInWe team for their generous and insightful comments to an earlier version of this article. They are also grateful to the two anonymous reviewers for their close reading and comments.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Carlsberg Foundation (Semper Ardens, grant no. CF17-0016). The TRANSLATE project discussed in the paper is supported by Innovation Fund Denmark (grant no. 9090-00078B).
