Predictive genetic testing and the making of the pre-symptomatic person: Prognostic moralities amongst Huntington's-affected families

Abstract

This paper identifies the emergence of new prognostic categories of genetic health information in contemporary predictive biomedicine. Arguing that pre-emptive genetic foreknowledge is linked intimately to the creation of a new classificatory order of "pre-symptomatic" persons, the paper discusses how the "prophetic" revelations of predictive testing technologies transform ordinary persons into moral prognosticators. Case study materials detailing the pre-symptomatic illness narratives of three British families affected by a late-onset monogenic condition (Huntington's disease (HD)) are analysed with a view to examining how, as a class of potential "pre-patients", persons are seen to be "ill" before they are "diseased". The clinical burden of "telling" a bad prognosis, similarly, is seen to shift to the moral responsibilities of kin who are obliged to make decisions about when and how to share or withhold genetic information with other potentially "pre-symptomatic" relatives. As genetic tests and treatments are developed and made available for common conditions, not everyone who undergoes genetic testing will face such a bleak prognosis as the HD population. Nonetheless, the narratives presented here illustrate how "the making of the pre-symptomatic person" speaks to some of the more general ethico-cultural dilemmas relating to the politics of pre-emptive health cultures.