Blood is thicker than water: Genetic testing as citizenship through familial obligation and the management of risk

Abstract

Genetic testing for late onset disease constitutes one aspect of a shift in the organization of public health according to a logic of risk that is based on the surveillance and regulation of normal populations. Using governmentality as a theoretical framework, this paper situates genetic testing as a neoliberal technique of governance that operates by invoking the power of individuals to make informed decisions about their health. Interview data are presented to illustrate how individuals are recruited, and construct themselves, simultaneously as self-regulating agents of health, and as 'carriers' of health risk information. Interviews with study participants who accepted or deferred genetic testing for skin cancer (melanoma) risk revealed that participants felt a responsibility not only to acquire genetic risk information and to manage their genetic risk by modifying their skin surveillance strategies, but also to communicate this information to family members so that they too could refine their risk management strategies to prevent melanoma. It is argued that by fulfilling these duties--to know genetic risk, to manage genetic risk and to carry information about genetic risk--individuals construct themselves as healthy and responsible citizens who collect and deploy genetic risk information in order to protect themselves and their families from disease onset. This paper concludes by considering how 'the carrier' and 'the family' are constituted as objects of, and vehicles for, knowledge concerning genetic risk within neoliberal programmes of governance.