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The concept of biological citizenship was introduced in the early 2000s to denote new forms of subjectivities and collective action on the basis of shared biological traits. Biomedical information opens up new opportunities for collectivization and bio sociality and subsequently allows for collectively claiming rights, access to social welfare, and other forms of public support. Biological citizenship emphasizes the importance of patients’ associations, disease advocacy organizations, and self-help groups that are giving rise to new forms of public participation and involvement in the political and public domain. The focus is on the extension of rights, the emergence of new possibilities of participation, the empowerment of the individual, and the choice-enhancing options of the new genetics. However, there is also a negative side to biological citizenship with the potential for exclusion and restriction of citizenship rights based on biological traits. This research paper introduces the concept of biological citizenship and discusses its merits and potential issues.
Since its ﬁrst use in the early 2000s, there has been an intense debate about the concept of biological citizenship (Petryna 2013; Rose and Novas 2005). The term, also referred to as genetic citizenship (Heath et al. 2004; Kerr 2003), has been used by scholars in heterogeneous ways and with slightly different meanings. Despite this, the different conceptualizations share some important assumptions and features. Most importantly, biological citizenship refers to the extension of rights, the emergence of new possibilities of participation, and the choice-enhancing option on the basis of shared biological traits. The term has gained much currency in science and technology studies and social theory, particularly among scholars who work on the social, political, and ethical implications of biotechnologies and biomedicine.
This research paper reviews the literature on biological citizenship and outlines some of the important features of this concept. It starts with a historical introduction of the concept and presents the key dimensions of this new form of citizenship. Particular attention is paid to the historical break between traditional concepts of citizenship and biological citizenship that has been postulated by several scholars in the debate. Subsequently, the expansion of individual and collective rights as well as the empowering aspects of biological citizenship are outlined. It shows that positive readings of biological citizenship that only focus on new forms of participation tend to neglect, or at least underestimate, the potential for exclusion and restriction of citizenship rights based on shared biological traits.
The Origins Of Biological Citizenship
The concept of biological citizenship was ﬁrst used by anthropologist Adriana Petryna in 2002 in her study on Ukrainian citizens who were affected by the nuclear disaster of 1986 (Petryna 2013). Prior to this, the term was introduced by Christopher Latiolais in a talk he gave at the University of Chicago in 1998 titled “The Body Politic: Naturalizing Biological Citizenship and Philosophical Reservations.” It was Petryna, however, who ﬁrst systematically spelled out the concept (Rose and Novas 2005). Her groundbreaking book Life Exposed: Biological Citizens after Chernobyl (2013) is based on extensive ﬁeldwork, presenting observations and interviews with government ofﬁcials, scientists, clinicians, activists from nongovernmental organizations, and people who lived and worked in the contaminated zone around Chernobyl. Petryna shows how, after the collapse of the Soviet Union, people who had worked at the Chernobyl Nuclear Power Plant made demands upon the new Ukrainian state through their biological status as sufferers from radiation sickness. In this context, the author introduces the concept of biological citizenship. She uses the term to describe “a massive demand for, but selective access to a form of social welfare based on medical, scientiﬁc, and legal criteria that both acknowledge biological injury and compensate for it.” (Petryna 2013, p. 6) For her, biological citizenship is not just a state but a “complex bureaucratic process” that allows activist groups and other populations to be granted a status of victims of the catastrophe and to receive appropriate compensation. In the post-Soviet era, survivors of the Chernobyl catastrophe organized themselves and became active in self-help organizations and advocacy groups in order to inﬂuence political decisions and administrative practices in favor of their struggle for recognition and public support. They successfully fought for rights to health-care access and social welfare on the basis of their shared medical conditions.
Conceptual Clarification And Definition
Petryna speciﬁcally links the concept to the case of those affected by the events in Chernobyl. It is a most useful and appropriate theoretical framework to capture what she observed in her ethnographic work. There was no intention to develop biological citizenship into a more comprehensive theory. In their inﬂuential article, Nikolas Rose and Carlos Novas (2005) then extended the concept and placed Petryna’s speciﬁc use in a broader context. The authors diagnose a new form of citizenship in Western democracies and, in practices of biological citizenship, see an important challenge for the nation-state and its forms of regulation. Rose and Novas distinguish between two dimensions of this process. Firstly, they link biological citizenship to previously unknown forms of participation and legal claims that question traditional forms of nationally bound citizenship rights. According to Rose and Novas, bioscientiﬁc knowledge and biotechnological innovations transgress national boundaries and regulatory competences. Similarly, patient organizations and support groups often choose transnational forms of organization, and the Internet is becoming more and more important as a source of information and communication platform for patients and people with disease risks. It is, therefore, important to highlight that citizenship here does not simply mean having a nationality, i.e., the legal status of being a citizen of a country. Instead, biological citizenship denotes new global forms of organization, engagement, participation in policy making, as well as civil and social rights. Secondly, the authors combine their observation of a pluralization and fragmentation of traditional political spaces with the thesis that there has been a historical break. They argue that biological ideas and prejudices have always shaped concepts of citizenship. By implicitly or explicitly specifying rules of membership, conditions of participation and criteria of access, they deﬁned who could be a candidate for citizenship and on what biological grounds. However, Rose and Novas insist that there is a decisive rupture between the eugenic projects and racialized politics of the past and the new genetics. They argue that biological citizenship stands for a new governmental regime that radically breaks with the eugenic and racialized past and that there has been a shift from political rationalities directed toward the management of risk at the level of populations to the individual management of speciﬁc and distinct genetic risks (Rose and Novas 2005, pp. 132–133). Thus, Rose (2007, p. 132) points out that “contemporary biological citizenship, in the advanced-liberal democracies of ‘the West’ [.. .] does not take this racialized and nationalized form.”
Debora Heath et al. (2004) use the term genetic citizenship to theoretically capture some of the features described by Rose and Novas for biological citizenship. They highlight the increasing importance of patient organizations and self-help groups and argue that these groups are questioning access to knowledge and claims to expertise, forging new alliances with biomedical researchers, and lobbying to inﬂuence political decision-making and receive funding for medical research. The emergence of such groups allows for new forms of subjectivities and collective action that also challenge the distinction between lay and expert knowledge. The authors focus on the extension of rights, on the emergence of new possibilities of civic participation and social engagement, and on the choice-enhancing options of biomedical technologies and, especially, the new genetics. They emphasize the new possibilities of genetic citizenship that blur the boundaries of the state and society, as well as between private and public.
An important underlying foundation of biological citizenship is Paul Rabinow’s (1996) concept of biosociality, though it is not always explicitly referred to. Biosociality describes new forms of collectivization and identity politics in light of the new genetics. Life is not merely understood as a natural given but as something that can be biotechnically altered and shaped according to ever changing cultural norms. Rabinow describes this process as a reconﬁguration of social relations on the basis of biological knowledge and frames it as a ﬂexible and nondeterministic form of biologization. This new biopolitics has no connection to eugenic projects of the past.
Biological Citizenship And Empowerment
Scholars who use the concept of biological citizenship almost exclusively refer to the importance of patients’ associations, disease advocacy organizations, and self-help groups that give rise to new forms of subjectivities and collective action, thus challenging existing borderlines between laypeople and scientiﬁc experts or active researchers and passive beneﬁciaries of technological progress. From a global bioethics perspective, biological citizenship consists of three key features that are particularly important.
Claiming Rights Without Duties?
Firstly, biological citizenship points to the empowering aspects of genetic information for individuals and social groups. With the advance in biomedical research, it is possible to produce a tremendous amount of information about the body that challenges traditional understandings of health and illness. This new knowledge is often described as being ambivalent or paradoxical in that it may help to diagnose and potentially cure illnesses but, at the same time, may also have negative psychosocial effects. Biological citizenship focuses particularly on the new opportunities that open up through the use of biomedical information in two respects. The new knowledge brings together people who share common genetic information and allows them to connect, share experiences, and organize themselves in informal and formal ways. It is not nationality, ethnicity, education, or social class that matters but the shared bodily experience and its genetic makeup that bring them together. At the same time, it also allows them, individually and as a group, to claim political, social, and civil rights in and beyond the nation-state. Biomedical knowledge seems to objectify the individual state of being. The apparent scientiﬁc credibility of this knowledge helps patient organizations, support groups, and other organizations to make their case more authoritatively. Their claims for support and access to health care, social welfare, and medical research are not based merely on subjective interests but supposedly objective – i.e., scientiﬁcally proven – facts. Several studies that refer to biological citizenship show convincingly how this process takes place and how genetic information shapes the individual and collective self-concept.
However, it has to be noted that the empirical case studies mostly focus on rare, monogenetic diseases. One could, therefore, expect biological citizenship only to be used as a theoretical framework in this very speciﬁc context. Interestingly though, and as pointed out earlier, several scholars abstract from the speciﬁc cases and explicitly broaden the scope of biological citizenship. Heath et al. (2004), in particular, suggest there should be biological citizenship for everyone. From their perspective, patients’ organizations for rare diseases form the avant-garde, and biological citizenship is soon to be expanded to a universal form of citizenship. With the focus on the expansion of political, social, and civil rights, and the positive claims to access to social welfare and participation in the democratic process, this seems to be a valid claim. However, this form of biological citizenship comes at the price of an ever-increasing geneticization and biologization of illnesses and, more generally, the social.
There is no guarantee that the recourse to biological categories exclusively extends individual and social rights. Those categories may well also be used to manage health risk and ultimately, populations, in ways that are not necessarily intended by those who claim biological citizenship status. This will possibly imply new constraints, obligations, and duties. For example, populations who successfully obtain access to social welfare and health care on the basis of their shared biological traits might, in exchange, be required to make regular use of screenings and preventive checkups, even against their own will. The risk that biological knowledge cannot only be used to gain access to social welfare and civil and political rights but will also be used by policy makers, legislators, and health administrators is not purely theoretical. In an age of neoliberal politics and the activating welfare state, citizens are already expected and sometimes obliged to actively care for themselves, be proactive, and show initiative both on the job market and with regard to their health. It is, therefore, important to remember that citizenship implies both rights and duties, and biological citizenship is likely to be no different in this respect. Proponents of this concept should consider this aspect.
Transnationalism And The Nation-State
A second important aspect of biological citizenship lies in its transnational nature. Genetic predispositions and features are not only shared by members of one nation but extend beyond national borders. Genetic diseases may be more common in one or the other culture, but ultimately, it is not concepts of race or ethnicity that are of relevance but shared genetic information. It therefore comes as no surprise that several studies show how patients’ organizations, support groups, and activists are increasingly forming international alliances or are established internationally to begin with (see, e.g., Callon and Rabeharisoa 2007; Fitzgerald 2008; Reubi 2010). Claims to access for welfare and other social support are no longer only directed at the nation-state but become a supranational issue. From a patient’s perspective, this opens up new opportunities because the initial denial of support on a national level can be contested and addressed internationally and fed back to national decision-making. In this sense, biological citizenship is a form of transnational citizenship (Bauböck 1994).
There is no doubt that patients’ organizations, support groups, and other organizations coordinate their activities and join forces beyond national boundaries. New genetics and biosociality play a key role in this process. However, as mentioned above, most of the case studies that use the concept of biological citizenship involve rare (mono-)genetic diseases. In order to establish a critical mass and be heard, the individuals and groups need to look beyond the nation-state and try to form alliances on an international level. Thus, the newly postulated forms of collaboration and organization may be more a result of speciﬁc circumstances that are unconnected to, or only remotely related to, shared biological traits. It is, therefore, important not to overestimate the transnational aspect.
Furthermore, and despite the potential for forming new transnational alliances, the current concept of biological citizenship is still informed by policies and practices within the nation-state. In other words, the literature on biological citizenship (too) often stresses the transnational dynamics of patient organizations and support groups. However, civil, political, and social rights, such as access to welfare, are still mostly granted on the level of the nation-state. Even the European Union as a socioeconomic union is no exception to this: the member states are still largely independent and have considerable scope for interpretation regarding access to public services or determining the requirements its citizens must fulﬁll in order to be acknowledged as full members of society. The focus on transnationalism promotes the idea of a historical break with the political strategies of nation-states, entities that mobilized biological knowledge in steering and regulating population policies in the past. This is not to deny the medical signiﬁcance and the societal impact of support group and patient associations for diseases that are characterized by forms of organization and modes of communication, which often transgress national borders.
Inclusion Versus Potential Discrimination
Thirdly, several studies drawing on the notion of biological citizenship have stressed the inclusiveness of the concept. It not only transgresses established national boundaries but also overcomes traditional politics of eugenics along racial lines and other categories (Epstein 2007; Rose 2007; Rose and Novas 2005). Biological citizenship allows individuals and populations to become accepted members of society. At the same time, it makes it possible to improve their situation through better access to health care and biomedical and technological innovations. The discussion often positively stresses the biological body as the basis of claims for social inclusion, recognition, and democratic deliberation. Again, this argument may hold true empirically for very speciﬁc contexts, such as patients’ organizations involvement in decision-making on research priorities, and health care in the context of rare genetic diseases. But such a perspective tends to downplay or ignore practices of surveillance and exclusion and the refusal of citizenship rights based on biological knowledge. Political strategies focusing on population policies and guided by racial concerns are not entirely a thing of the past.
Examples of this can be observed by examining other contexts in which biological knowledge plays an important role: forensic genetics and the use of biotechnologies for immigration control (Aas 2011; Heinemann and Lemke 2014), for example. In the context of immigration, a set of biotechnologies such as DNA testing, ﬁngerprinting, iris scans, etc., are used, not only to include people or verify their claims for legal immigration but also to systematically exclude certain groups of foreigners seeking legal residence in other countries. DNA testing, for example, is widely employed in immigration procedures in industrialized western countries today, but such tests are not applied equally to every group of applicants. They are limited to applicants from speciﬁc countries that have previously been excluded or discriminated against on racial grounds. They are now the target of supposedly neutral and objective biotechnologies. The use of DNA testing in immigration policies does not signify the advent of “molecular biopolitics,” as proposed by Rose (2007), that ﬁnally eliminates the focus on bodily features such as skin color, hair texture, eye shape, etc. Rather, it serves to reafﬁrm and reestablish “traditional” forms of classiﬁcation and exclusion. One central question Rose and Novas (2005) allude to, and which has been neglected in the discussion on biological citizenship, addresses the link between biology and citizenship, asking what biological prerequisites an individual must fulﬁll in order to become a citizen. In decision-making processes on immigration, biological features, in a very literal sense, have become the basis for citizenship claims.
This is not to deny important historical transformations. On the contrary, it has to be noted that terms such as “population” and “race” are not stable and singular concepts but rather ﬂexible and ﬂuid notions. Their meanings depend on the social and political rationalities in which they are articulated. There are important differences between the idea of racial variations as deﬁning distinctions between “natural kinds” of people, marking borders between species that were not to be crossed in older racial thought, and of racial variations in contemporary post-genomic research and medical practice as scientiﬁcally and clinically useful information. However, biological citizenship refers not only to a displacement toward the individual management of genetic risks but also to new forms of control targeted at particular populations. In this respect, the notion that the use of genetic information for population control belongs to the biopolitics of the past has to be complemented by the potential for exclusion, stigmatization, and genetic discrimination.
Biological citizenship highlights important features of the use of biotechnological innovations and biomedical knowledge in today’s society. It makes us aware of the empowering potentials of new molecular genetics both on an individual and societal level. People, whether they are patients, relatives, activists, or other interested members of society, can get involved, organize themselves, and claim rights on a national and international level in ways that have not previously been possible. Biological citizenship emphasizes the cohesive power of biomedical information and the productive uses of scientiﬁc progress for the cause of social recognition and acceptance. These positive aspects should not be underestimated, and one of the merits of biological citizenship is in appropriately accounting for and capturing this aspect.
However, it is important to keep in mind that there is a ﬂip side to this concept. As soon as biological features become a fundamental aspect of political decision-making, there is a risk of new eugenics with all its consequences. Biological information can be used not only to claim rights but also to serve as a means for stigma, exclusion, and discrimination. What is more, the constant reference to “new” and innovative, the historic break, tends to conceal some of the ethically problematic continuities of previous socio-biological concepts. Biological citizenship is not just the new form of belonging and participation, a desirable new form of universal transnational citizenship, it also brings an inherent risk of biological determinism that was observable in the past. A more nuanced approach to the topic is needed that takes both the opportunities and the challenges of the new genetics and molecular biology for the concept of citizenship and today’s societies into account.
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