Linguistic ethnography and institutions

B

The politics of autonomy in genetic testing of children

Current ethical guidelines for the genetic testing of children protect the `child’s future autonomy’ from parental choices if there is no immediate medical benefit from testing. Drawing loosely on `governmentality’ as an analytics of power, we argue that ethical guidelines are symptomatic of a shift in the way that children are constituted as subjects and as potential citizens. For instance, the concept of autonomy has emerged as a liberal solution for the governance of genetic information: subjects are to be governed through their freedom and by enacting their lives through an ethic of choice. However, governmentality is at risk of missing some important tensions within the politics of childhood testing if it fails to analyse the authoritarian dimension of liberalism. The paternalistic character of ethical governance is not so much a confrontation between autonomy and medical authority, but a new kind of obligation between professionals and clients. In this paper, we consult empirical examples of interview data with medical professionals to examine the rhetorical construction of ethical dilemmas. Professional accounts reveal competing versions of autonomy and ambivalence about difficult and challenging interactions with parents and children. Our findings suggest that authoritarian and liberal practices are twin aspects of a practical rationality that seek to recruit the child’s autonomy as a device for shaping adult decisions and producing future subjects who are self-sufficient in the management of their genetic risk

Professional ambivalence: accounts of ethical practice in childhood genetic testing

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of `genetic responsibility’ between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from competing views over what constitutes the `best interests’ of the child in relation to parental preferences on the one hand, and professional codes of practice on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical explanations/descriptions of professionals in research interviews. Interviews (n=20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes – juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation of the child’s autonomy, avoidance of parental responsibility and acknowledgement of uncertainty – and then, using Rhetorical Discourse Analysis, examine the range of devices through which ethical explanations are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An important device for facilitating ethical explanations is the use of extreme case scenarios which reconstructs dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis of professional accounts suggests that ethical practice is not a simple matter of implementing principles but managing the practical consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners construct and share cases as useful illustrations of evidence-based ethical practice