Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar to argue for or against particular genetic tests. We discuss the influence these choices (...) have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making. (shrink)

In this paper, we will discuss the prospect of human reproduction achieved with gametes originating from only one person. According to statements by a minority of scientists working on the generation of gametes in vitro, it may become possible to create eggs from men’s non-reproductive cells and sperm from women’s. This would enable, at least in principle, the creation of an embryo from cells obtained from only one individual: ‘solo reproduction’. We will consider what might motivate people to reproduce in (...) this way, and the implications that solo reproduction might have for ethics and policy. We suggest that such an innovation is unlikely to revolutionise reproduction and parenting. Indeed, in some respects it is less revolutionary than in vitro fertilisation as a whole. Furthermore, we show that solo reproduction with in vitro created gametes is not necessarily any more ethically problematic than gamete donation—and probably less so. Where appropriate, we draw parallels with the debate surrounding reproductive cloning. We note that solo reproduction may serve to perpetuate reductive geneticised accounts of reproduction, and that this may indeed be ethically questionable. However, in this it is not unique among other technologies of assisted reproduction, many of which focus on genetic transmission. It is for this reason that a ban on solo reproduction might be inconsistent with continuing to permit other kinds of reproduction that also bear the potential to strengthen attachment to a geneticised account of reproduction. Our claim is that there are at least as good reasons to pursue research towards enabling solo reproduction, and eventually to introduce solo reproduction as an option for fertility treatment, as there are to do so for other infertility related purposes. (shrink)

When we talk about ideology and new genetics we tend to think of concepts like geneticisation and genetic essentialism, which present genetics and biology in deterministic terms. However, the aim of this article is to consider how a particular economic ideology - neoliberalism - has affected the bioeconomy rather than assuming that it is the inherent qualities of biotechnology that determine market value. In order to do this, the paper focuses on the discourses and practices of economic competitiveness that (...) pervade biotechnology policy-making in the UK, Europe and the USA. Finally it will consider how the manufacture of scarcity - in order to produce the bioeconomy - has led to a problematic focus on a specific innovation paradigm that may prove detrimental to the development and distribution of new biotechnologies. (shrink)

La génétique est une science qui avance à pas de géants et influence de plus en plus nos perceptions des problèmes de société et de santé. Selon le philosophe-médecin Hank ten Have, "La culture occidentale serait profondément entraînée dans un processus de généticisation" qui touche de nombreuses sphères de la vie humaine. Comment cette nouvelle "donne" affecte-t-elle les questions de responsabilité? Comment dessiner les contours de cette notion? Le glissement de la génétique vers la "généticisation" entraîne-t-il une déresponsabilisation ou même (...) la destruction des valeurs démocratiques? Les normes juridiques et les encadrements éthiques actuels sont-ils suffisants pour encadrer les progrès de la génétique? Comment une société peut-elle faire face à la "généticisation"? Les contributions du présent ouvrage sont issues du septième séminaire d'experts de l'IIREB et émanent d'experts franco-québécois de disciplines variées, juristes, médecins, philosophes, historiens, sociologues, éthiciens, anthropologues qui ont confronté leurs points de vue sur cette question. Puisse cet ouvrage collectif contribuer, tant pour les citoyens, les pouvoirs publics et les chercheurs à enrichir leur réflexion! (shrink)