Agency and Choice in Genetic Counseling: Acknowledging Patients’ Concerns
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.
KeywordsAgency Australia Breast cancer Choice Discourse analysis Familial cancer Genetic counseling Genetic testing Nondirectiveness Ovarian cancer Risk
I would like to acknowledge Graeme Suthers, Joya McCormack, Jacquie Armstrong, Debra Trott and Sally Russell for their assistance with data collection and all things ‘genetic counseling’. My thanks also to Oonagh Corrigan, Madeleine Petersen, Martha Augoustinos, Ian John, Katherine Hodgetts, Alice Hawkins, and three anonymous reviewers for valuable comments on earlier drafts of this paper. Most importantly, I would like to express my gratitude to all the clients of the Familial Cancer Unit who participated in this study.
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