ABSTRACT
In America’s healthcare marketplace, the user has long been treated as both a patient and a consumer. She has had some choice over her physician and could demand access to some services, and was often left paying exorbitant prices. But her power has always been somewhat limited, constrained by government regulations over drugs and medical devices, the rules of insurance companies, and the expertise and authority of science policy advisors, physicians and other healthcare professionals.The technologies of the twenty-first century, facilitated by particular social, political, and economic systems, have pushed the identity of the healthcare user further toward that of a consumer who is presumed to be empowered by increased access to information and can, therefore, make independent decisions about herself, her healthcare, and her life. Scholars have argued, for example, that the internet allows users to come to medical appointments informed with information that diagnoses maladies and suggests treatments (Broom 2005, Fox et al. 2004). These technologies have shifted the power dynamics of the doctor-patient relationship, destabilizing the traditional role of the physician whose expertise was based on access to specialized knowledge. In this chapter, I argue that genetic testing is playing an important role in producing the
twenty-first century healthcare consumer. Once a service available only through specialized clinics inside research-based university hospitals and used to predict or diagnose a handful of severe diseases, an array of genetic tests are now offered by companies through the internet and used to identify a wide variety of characteristics and conditions. Some tests predict an individual’s risk of developing breast or ovarian cancer, while others, as Kimberly Tallbear discusses (Chapter 1 in this book), claim to map an individual’s genetic ancestry. Genetic testing companies, health policymakers, and some scholars herald the potential of these tests to empower users.Nikolas Rose and Carlos Novas, for example, have suggested that with the rise of genetic medicine has come the birth of the “somatic individual,” who, rather than being passive and disadvantaged by biological destiny, is able to use the information generated through genetic testing to “increase the quality of their lives, self-actualize, and to act prudently in relation to themselves and to others” (Novas and Rose 2000: 487).Responding to scholars who argue that the rise of genetic technologies will lead to the stigmatization of genetically disadvantaged individuals, these authors and their followers remind us that these users should not be understood
simply as helpless victims. By producing knowledge about their bodies, these technologies can also help users better govern themselves and their futures. Novas and Rose’s “somatic individual” can also be understood as an autonomous consumer, who makes rational choices in the marketplace about whether to purchase a genetic test and which test to take. Once she is equipped with the additional information generated by the test, she can become a better and more rational actor in the marketplace. But those who emphasize the empowerment potential of genetic technologies, including
these scholars who have developed the idea of the “somatic individual,” assume that the experiences of users will be the same regardless of the technology’s provenance and design, and the position of the user. Indeed, the tantalizing prospect of genetic testing as a tool of empowerment rests on four key assumptions: that the information generated by this technology is accurate, easily understood, and benign; that the information produced is similarly empowering regardless of its utility; that it will have similar meaning and consequences regardless of the demographics of the user; and that offering this information directly to the end user will allow her to become sufficiently expert to make independent decisions about her life. If we look deeply at these genetic testing systems, however, we see that these assumptions are problematic. Rather, we see that the design of a genetic testing system shapes the utility of the information provided and its capacity for empowerment. In addition, treating the users of genetic tests as typical consumers may have significant drawbacks for their health and welfare, which public health professionals and policymakers would do well to address. This chapter brings together two strands of scholarship from the field of science and tech-
nology studies (STS).The first demonstrates that a technology’s historical, social, and political environment, including its users, shapes how it is built and marketed (Bijker et al. 1989, Wetmore 2004, Winner 1980). My own research has demonstrated how national context, including its political culture, institutional arrangements, and social norms and values shape the development of science and technology (Parthasarathy 2007). I have also suggested that this context influences both the design of technologies and their implications. To facilitate this analysis, I introduced (Parthasarathy 2007) the concept of “sociotechnical architectures” – the human and technical components of innovations and the way developers fit them together to perform specific functions. Identifying sociotechnical architectures and tracing their development illuminates how choice over the form of each component and its assembly into a functioning whole influences a technology’s social consequences. Just as a building’s architecture is the orderly organization of materials and components to
achieve a functional, economical, and sometimes environmentally sustainable entity, a technology’s “sociotechnical architecture” incorporates functional, social, and ethical considerations to serve human needs. Thus, to conduct an architectural assessment, we must first identify the functions of the technological system being assessed.We then identify the human and technical components that fulfill those functions – how the technology is packaged, how it is offered, inherent safeguards and limitations in the offering, and its cost. Finally,we study how the choice, design, and assembly of these components “structure” the technology’s implications, by influencing the way system participants interact with, and think and make decisions about, the technology. A building’s architecture shapes who can enter, how they move inside, and what and where activities can be performed.The placement of windows or doors, for example, influence the types of discussions that occur in a room, and often have symbolic meaning regarding an occupant’s power and authority. Similarly, the architecture of a genetic testing system enables and constrains user empowerment, familial relationships, and the healthcare professional’s level of authority, among other things. In other words, we cannot understand the empowerment potential of a technology without investigating, in detail, its sociotechnical architecture.
