title: The micropolitics of responsibility vis-à-vis autonomy: parental accounts of childhood genetic testing and (non)disclosure.
abstract: Genetic testing and (non)disclosure of genetic information present ethical and moral dilemmas for the management of parental responsibility vis-à-vis the child's autonomy. Ethical guidelines aimed at professionals currently seek to defer childhood testing where there is no clear medical or psychosocial benefit. This version of autonomy is derived from a bioethical paradigm which brackets the individual rights and capacities of the child. In this paper we focus on situated parental accounts of responsibility/autonomy to understand the complex forms of relational work -i.e. the micropolitics of balancing rights and responsibilities - involving a range of inherited genetic disorders. Interviews (n= 20) were conducted with parents whose genetic condition may have had consequences for their children. Using rhetorical discourse analysis, we show how parents draw upon a number of rhetorical/discoursal devices to produce accounts where genetic responsibility is actually or potentially transmitted to the child. We identify three kinds of accounting practice: (1) aligned responsibility; (2) deferred responsibility; and (3) misaligned responsibility. Each of these practices demonstrates how parents position themselves responsibly by foregrounding figures and events onto which the child's autonomy is selectively mapped. Rather than simple representations, we regard these accounts as complex moral performances that seek alignment with broader bioethical discourses.
authors.affiliation: ESRC Centre for Economic and Social Aspects of Genomics, Cardiff University, Cardiff CF10 3WT, UK. arribas-ayllonm@cf.ac.uk
authors.forename: Michael
authors.initials: M
authors.lastname: Arribas-Ayllon
authors.forename: Srikant
authors.initials: S
authors.lastname: Sarangi
authors.forename: Angus
authors.initials: A
authors.lastname: Clarke
mesh_terms: D000293:Adolescent; D000328:Adult; D000739:Anecdotes as Topic; D026688:Bioethical Issues; D002648:Child; D003219:Confidentiality / Q000941:ethics*; D005260:Female; D005820:Genetic Testing; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D026684:Personal Autonomy; D006113:United Kingdom