Richard Tutton

The term research subject has traditionally been the preferred term in professional guidelines and academic literature to describe a patient or an individual taking part in biomedical research. In recent years, however, there has been a steady shift away from the use of the term 'research subject' in favour of 'research participant' when referring to individuals who take part by providing data to various kinds of biomedical and epidemiological research. This article critically examines this shift, reflecting on the different meanings evoked by the terms 'subject' and 'participant', as well as examining recent examples of patient activism in research. It concludes by suggesting that the wholesale unreflective adoption of the term 'participant' is inappropriate and provides instead a guide on how to determine the circumstances in which the terms subject, participant and activist should legitimately be used

In a recent discussion about how scientific knowledge might potentially change our understanding of the nature and extent of human genetic, cultural, or biological variation, the sociologist David Skinner identified two competing visions of the future: one that was decidedly dystopian, which conjured up a “re-racialized” future, and an opposing utopian future in which the potential for racialized thinking might be finally overcome. We can situate the ongoing debates about the congestive heart failure drug BiDil, approved by the Food and Drug Administration for use only by African Americans, in relation to these differing future prospects.When the FDA announced its approval of BiDil in June 2005, it located the drug, and perhaps the future of pharmaceutical development, within a particular vision of the future, heralding BiDil as “representing a step toward the promise of personalized medicine.” The discourse of “personalized medicine” can be characterized as part of a utopian future, one in which clinicians will be able to make increasingly individualized decisions based on each patient’s genetic makeup so that the drugs they take will be those that work best for them.

The prospect of human societies being made anew on other planets is a powerful recurring theme in popular culture and speculative technoscience. I explore what Science and Technology Studies offers to analyzing how the future is made and contested in present-day endeavors to establish humans as multiplanetary subjects. I focus on the case of Mars One—an initiative that aims to establish a human settlement on Mars in the 2020s—and discuss interviews undertaken with some of the individuals who have volunteered to be the first humans to live on Mars, drawing on STS work on futures and sociotechnical imaginaries and scholarly discussions of utopia. Seeing themselves as part of a project that would start to “establish what it means to live on another planet,” I discuss how interviewees talked about how sociotechnical relations could be remade in the future, both on Earth and on Mars, through the pursuit of this technoscientific project. I conclude that this project is an expression of a multiplanetary imaginary of human beings no longer subject to Earth—but, through sociotechnical inventiveness, able to live on other planets.

This article critically engages with the influential theory of ‘‘molecularized biopower’’ and ‘‘politics of life’’ developed by Paul Rabinow and Nikolas Rose. Molecularization is assumed to signal the end of population-centred biopolitics and the disciplining of subjects as described by Foucault, and the rise of new forms of biosociality and biological citizenship. Drawing on empirical work in Science and Technology Studies, we argue that this account is limited by a focus on novelty and assumptions about the transformative power of the genetic life sciences. We suggest that biopower consists of a more complex cluster of relationships between the molecular and the population. The biological existence of different human beings is politicized through different complementary and competing discourses around medical therapies, choices at the beginning and end of life, public health, environment, migration and border controls, implying a multiple rather than a singular politics of life.

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research.

Of the bodily substances in which STS scholars, anthropologists, sociologists, and medical historians have been interested, saliva has arguably been overlooked. Yet, in the past 20 years, saliva has become important to the development of consumer genetic tests. Historically, expectoration has been associated with the spread of disease and social indecency, but when the personal genomics company 23andMe began hosting spit parties in 2007, the act of spitting was transformed into an act of self-empowerment through which the individual gained new health information and saliva turned into a new biological source for measuring health and illness. Attending to saliva’s social meanings over time, and by analyzing 23andMe “unboxing” YouTube videos, we argue that saliva has become a promissory substance whose place is no longer reserved only for the inner spaces of the body, but circulates outside the body, forming an important part of the contemporary bioeconomy.