Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public (...) debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel. (shrink)

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare (...) professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations. (shrink)

Heroism is apparently nonadaptive in Darwinian terms, so why does it exist at all? Risk-taking and heroic behavior are predominantly male tendencies, and literature and legend reflect this. This study explores the possibility that heroism persists in many human cultures owing to a female preference for risk-prone rather than risk-averse males as sexual partners, and it suggests that such a preference may be exploited as a male mating strategy. It also attempts to quantify the relative influences of altruism and bravery (...) in the evolution of heroism. Our study found that females do prefer risk-prone brave males to risk-averse non-brave males, and that men are aware of this preference. Bravery in a male was shown to be the stronger factor influencing female choice of short-term partners, long-term partners, and male friends, with altruism playing a lesser part in their choice. Altruism was deemed important in long-term relationships and friendships, but for short-term liaisons, non-altruists were preferred to altruists. Heroism may therefore have evolved owing to a female preference for brave, risk-prone males because risk-taking acts as an honest cue for "good genes." Altruism was judged to be a less influential factor in the evolution of heroism than bravery and a demonstrated willingness to take risks. (shrink)

Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing (...) company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data. (shrink)

The question ‘what is to be done?’ is most often uttered at moments of great urgency and political crisis. It operates in a divide between theory and practice, when thinking should end, and action must proceed. This article considers how the grammar of this question produces relationships between subjects, action and the future, drawing a relationship between the constituent grammar of the question and Gilles Deleuze and Félix Guattari's notion of the collective assemblage of enunciation. For Deleuze and Guattari, the (...) collective assemblage of enunciation denotes amongst other things an immanent relationship between language and action: a relationship in which politics and language are bound together in a relationship of forces. This approach aims to rethink the urgency and force that is associated with the question through examining and re-proposing the connection between the linguistic organisation of the question and the different forms of political organisation that the question might produce. In so doing, Deleuze and Guattari provide a conceptual and linguistic apparatus for rethinking the plane of political action and organisation. (shrink)