The micropolitics of responsibility vis-à-vis autonomy: parental accounts of childhood genetic testing and (non)disclosure

Arribas-Ayllon, Michael ORCID: https://orcid.org/0000-0003-2669-2781, Sarangi, Srikant Kumar and Clarke, Angus John ORCID: https://orcid.org/0000-0002-1200-9286 2008. The micropolitics of responsibility vis-à-vis autonomy: parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health & Illness 30 (2) , pp. 255-271. 10.1111/j.1467-9566.2007.01037.x

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education)
Subjects:	H Social Sciences > HQ The family. Marriage. Woman R Medicine > R Medicine (General)
Uncontrolled Keywords:	Parental accounts; aligned responsibility; deferred responsibility; misaligned responsibility; autonomy; genetic testing of children; rhetorical discourse analysis
Publisher:	Blackwell Publishing and the Foundation for the Sociology of Health & Illness
ISSN:	0141-9889
Last Modified:	19 Oct 2022 08:42
URI:	https://orca.cardiff.ac.uk/id/eprint/18784

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