Agency and choice in genetic counseling: Acknowledging patients' concerns

Abstract

This paper investigates to what degree patients can be said to effectively manifest agency during the process of genetic counseling for cancer risk. Rather than talk about agency on an abstract level, the discussion is grounded in examples from actual genetic counseling sessions. Past research in this area recognises three dimensions along which clients' agency can be assessed: the availability of choice; potential prescriptiveness or framing biases in the presentation of options; and whether particular decisions are embedded within broader moral frameworks (in particular, perceived obligation to kin). In this paper it is argued that in addition to these three dimensions, an investigation of agency needs to explore the degree to which the concerns brought to counseling sessions by patients match up with the choices and management strategies offered by genetic counsellors. An analysis of four excerpts from actual counseling sessions is presented to illustrate the case. © 2009 National Society of Genetic Counselors, Inc.