ABSTRACT
Accounts of the transformation of clinical medicine are also linked to narratives concerning the medical construction of patienthood. Just as the trajectories of technoscientific change imply a transformed – often reduced – medical practitioner, so too they imply a transformation in patienthood. Rett syndrome provides an opportunity for us to examine some of the consequences of genetic medicine for patients and family members. The patient in contemporary, biomedicalized medicine is portrayed primarily in
terms of a constellation of factors that help construct new kinds of biomedical identities. They include an emphasis on risk rather than overt disease, the imperative for people to act as responsible consumers of health care, and to be morally responsible for their own care (cf. Clarke et al., 2003). It is also argued that this version of patienthood reflects a more general neoliberal ideology, with an emphasis on individual responsibility, self-management and choice. From this perspective, the gaze of medicine is no longer directed at the patient but on the population, and of the non-symptomatic individual, through an imperative of self-surveillance on the part of responsible individuals, through the identification of risk factors and values, and through the endorsement of health-promoting regimes. Biological citizenship thus rests on new forms of governmentality, it is claimed, that include transformations in personal identity, under the widened gaze of organized medicine. These transformations in turn imply not only individual responsibility, but
also newly emergent phenomena such as ‘biological citizenship’ (e.g. Rose, 2006). Its proponents argue that biological citizenship arises through the construction of individual and collective identities through biological or medical categories. The transformations of medicine that give rise to its molecularization and geneticization are central to this process of reconfiguration. The rise of genetic medicine in particular is held to produce key transformations in patienthood, and indeed in personhood. We have already made reference to the ‘geneticization’ thesis in general terms. We need to examine it in more detail here, as it relates specifically to the creation of personhood. It would be all too easy to assume that the progressive identification of more and more conditions with a genetic basis leads inexorably to the redefinition of persons in molecular terms, or the
transformation of social relations into genetically defined categories of biological relatedness and shared risk. Clearly there are indeed tendencies in that direction. The insertion of
genetics into a broad array of medical conditions undoubtedly introduces new forms of self-awareness, and the identification of genetic risk has significant implications for individuals who are affected, or potentially affected, and members of their kin. Equally, however, we must be careful not to assume wholesale transformations in this domain. If there is a persistent longue durée for the clinic, then there are equally enduring forms of personhood and social relatedness. If medical practice is best thought of as a palimpsest of knowledge-systems and practices, then so too is personhood and so too are social relations. The idea of biological/biomedical citizenship is a case in point. Promoted
by authors such as Rose (2006; Novas and Rose, 2000), this notion has a double valency. On the one hand, it implies that individual and collective identities are increasingly shaped by shared biomedical characteristics. They include shared genetic risk, characteristics defined by ethnicity, shared environmental exposure and an array of features that are simultaneously social and natural. In that sense the contemporary person is rendered increasingly biological. Gender, race, life-span and other life-chances are increasingly identified in terms of biologically given predispositions. So too are character traits, moral character, mental health, even sociability itself. At the same time, however, such biological-cum-medical categories, such as those prescribed by genetic constitution, create the possibility for the emergence of new social formations and new bases for collective action. Biological citizenship may, therefore, imply mobilization in terms of shared interests that are defined in biomedical terms. We can see a mobilization of lay people around Rett syndrome that displays
features of biological citizenship. The processes can be dated quite precisely and the key actors identified. Around the time of the first English-language accounts of Rett syndrome (Rett, 1977; Hagberg et al., 1983) and subsequent papers in the 1980s describing the clinical classification of this syndrome (cf. Budden, 1986; Naidu et al., 1986; Coleman et al., 1988; Kerr and Stephenson, 1986), the first international family association mobilized around this condition. The US-based International Rett Syndrome Association was created in 1984 by ‘a determined group of parents’ to support families, raise awareness and importantly fund biomedical research, including the team that identified the MECP2 gene in 1999. Following the MECP2 discovery a ‘passionate group of parents’ broke away to form the Rett Syndrome Research Foundation to focus their efforts on raising money to support a programme of basic biomedical research (their funding programme included Adrian Bird’s reversal of symptoms in a mouse model in 2007). The announcement of the rescue experiment had a significant impact on the goals of these organizations and the two groups merged to form the International Rett Syndrome Foundation (IRSF) with a unified mission ‘to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing
information, programs, and services’. However, their ultimate goal repeated in all the promotional material is the development of a cure, and typically the chief scientific officer (Horton, 2010) for the IRSF emphasizes this mission within their fundraising campaigns:
This means a lot of new people will be learning about and hopefully donating to help us conduct research and find treatments to help symptoms and ultimately, reverse Rett syndrome.
