DOI link for Introduction
DOI link for Introduction
In 1974 an edited collection of papers appeared, bearing the curious title Genetic Responsibility: On Choosing Our Children’s Genes (Lipkin and Rowley 1974). It was the publication of a symposium on ‘Genetics, Man and Society’ held two years earlier at the American Association for the Advancement of Science in Washington DC. Attended by medical, legal, ethical, psychiatric and genetic professionals, the symposium explored the implications of what were, at the time, major advances in genetic knowledge. The recent availability of prenatal testing and preimplantation genetic diagnosis raised fresh concerns for both clients and professionals about whether to abort aﬀected foetuses and whether to inform relatives about actual or potential risks. It was not that new genetic technologies ‘created’ these new and diﬃcult choices, but that choice was necessitated by risks. Within the clinical setting, the complexity of decision making and the greater need for informed consent aﬀorded new opportunities to establish the accepted principles of genetic counselling and to outline its ‘non-directive’ approach to information-giving (Hsia 1974). The notion of free will that the Butler quote above assumes as axiomatic, is inherently entangled with notions of risk and responsibility when decisions have to be made about self and others, especially in the wake of new technologies and their impact on social lives. The term ‘genetic responsibility’, as it was used in 1974, seems to imply not a
narrowing of responsibilities but the opening up of a new ﬁeld of ethical conduct. This applies more generally to social and moral responsibility in other spheres of family life. However, the peculiar qualities of genetic knowledge formed new relations of identiﬁcation with the bearer of genetic risks; it formed new relations with the unborn child who embodied such risks, but it also formed new relations with relatives who might also have to face similar complex decisions. That
identity, reproduction and health could be framed in terms of ‘genetics’ and that ‘responsibility’ now assumed a genetic character meant that one’s biological future was now entangled in the calculation and management of one’s freedom. As the Butler quote above illustrates, free will is more than simply a liberal ‘right’, or an ontological ‘fact’; it also confers an obligation to manage oneself in terms of freedom. Rose and Novas (2005) have described this phenomenon of managing the present in light of biomedical knowledge of one’s future as ‘genetic prudence’: the activity of responsibly engaging in ethical calculation of future hazards through acts of choice, in this case, genetic choice. The appearance of genetic responsibility in the early 1970s marked an event in which new biological knowledge for the detection and calculation of ‘genetic risk’ were shaping the values, norms and expectations of individual identity as well as contemporary citizenship. This book is about ‘genetic testing’ from the point of view of this new landscape
of ethical conduct bounded by choices and responsibilities. It examines the ways in which the testing of inherited risk enjoins new forms of social, individual and professional responsibility, and by extension, provides new resources for blame. Families and professionals, entrepreneurs and consumers, and ‘the public’ more generally, are being drawn into discussions and decisions, which are changing the ways in which we think about ourselves and our relations with others, about future risks and how these can be minimised, if not avoided altogether. Concerns about conﬁdentiality and informed consent involving children, the assessment of competence and maturity, the ability to engage in shared decision-making through acts of disclosure and choice, the diﬃculties of communicating risk to close and distant relatives, are just some of the issues faced by ‘at risk’ families in the clinic. More widely, the commercialisation of genetic information for the general public – for acting on inheritable genetic disorders and lifestyle risks – signals how genetic testing is broadening its circumference. The recent emergence of the personal genomics industry, the realities of direct-to-consumer marketing, and the testing for common complex disorders are raising new concerns about access to, and communication of, genetic knowledge. In the book we address these issues by considering ﬁrst the ‘technological trajectory’
of genetic testing and its implications for genetic counselling (Chapter 2). We then take a wider historical focus, contrasting classical-liberal and neo-liberal perspectives on heredity and genetics (Chapter 3). In Chapter 4, we outline our analytical framework, what we refer to as Rhetorical Discourse Analysis, which can be utilised for dealing with diﬀerent kinds of data settings covered in the book. Building on the work that has examined representations and metaphors of genetics in the media, we explore the spectacle of genetic testing for common complex disorders on television and the internet (Chapter 5). The extent to which families engage in ‘genetic responsibility’ and use genetic knowledge as resources for displaying selfresponsibility as well as allocating blame to others is also considered in detail (Chapter 6). In the ﬁnal two chapters, we examine the dynamics of negotiating and communicating genetic knowledge in the clinic (Chapter 7) and the formulation of professional dilemmas arising speciﬁcally in the prenatal genetics clinic (Chapter 8). The concluding chapter brings together the various threads
and speculates future directions in terms of social research in genetic testing and its relevance for clinical practice. This book explores a range of data sites – representations of genetic testing on television and on the internet, research interviews with families and professionals, transcripts of clinical consultations and professional forums – to examine how new genetic technologies are discussed and negotiated in these domains.