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ABSTRACTBiomedical advances are transforming the diagnosis and treatment of disease. Patienthood is also transforming, as patients actively participate in research, innovation and regulation of novel technologies and therapies. In this paper we explore the new kinds of practices that patients are performing in their roles as research subject, co-researchers, donors, campaigners, representatives and consumers of novel stratified therapies. We outline their embodied contributions to clinical trials, biobanks and stratified therapies prior to, during and after having cancer. Exploring how patienthood involves donating more than tissue or data to these developments, we consider their emotional and identity work which informs and shapes the novel diagnostics and therapies being developed. We also consider how this kind of work is stratified according to the social and biological location of participants, and end by reflecting on the implications of our analysis for the organisation and regulation of biomedicine.

Testing for food allergy/intolerance is a rapidly expanding market. We present an exploration of the efforts of one of the market leading companies in this sector to promote and justify their product in the face of considerable opposition from conventional medicine, as well as a range of alliances with patient groups, so-called ‘lifestyle gurus’ and their customers. In extracting the latent value of an immunoglobin called IgG, testing companies engage with and extend entrepreneurial patienthood and new forms of pastoral expertise in their efforts to identify and manage a group of low-level chronic conditions that resonate with contemporary social unease about the hazards of modernity. Rather than foregrounding novelty and hope, we found that a great deal of emphasis was placed upon establishing conventionalitywith business practice and scientific method, and relieffrom the past. We also found that the localcircuits and networks of engagement, in which the company operated to secure their reputation and extend their market, were vitally important. We end by reflecting upon the implications of our analysis for contemporary scholarship on biocapitalism.

Public understanding of the new genetics is often criticized in discussions about the social and ethical issues the new genetics raise. In this paper we challenge the “deficit model” evident in this dominant discourse, and offer a constructivist approach. We explore lay expertise about the new genetics, presenting an analysis of data from ten focus group discussions with a range of lay people. After distinguishing four different types of knowledge lay people hold—technical, methodological, institutional, and cultural—we go on to consider how lay people's mobilization of this “stock of knowledge” is influenced by social location and social context, exploring in particular interviewees' perceptions of relevancy. We conclude that identifying lay people as expert in, rather than ignorant of, the way genetics may shape their lives is a fundamental first step in moving toward greater lay participation in policy discussions and, ultimately, decision making about the new genetics and health.

“Where do we draw the line?” is a question that is frequently asked in discussions about the new genetics. In this paper we explore a range of lay people's accounts of drawing the line. We show that, beyond its rhetorical function, answering this question involves important discussions about genetic research, testing, regulation, and social provision for people who are sick or disabled. It raises difficult questions about clients' and service providers' autonomy and responsibility and about which human illnesses, conditions, and characteristics ought to be the subject of research and testing. In particular, we show how differences in the amount and type of information and advice available to clients of genetic testing, the level of social support to people with particular conditions, and people's perception of stigma, suffering, and quality of life, make drawing the line highly problematic. We end by discussing the implications of our analysis for policy making, considering how the ambiguities and tensions in lay accounts might enable, as opposed to stifle, greater democratization of the new genetics.

Experiencing the New Genetics: Family and Kinship on the Medical Frontier. Kaja Finkler. Philadelphia: University of Pennsylvania Press, 2000. xiv. 277 pp.