With others and for others: Accounting for decisions about genetic testing in the clinic

Abstract

While there are various factors influencing clients’ decisions about genetic testing; testing for the sake of others is not uncommon (Hallowell et al. 2005, Ho et al. 2003). This paper focuses on decisions about testing (DOT) when a genetic mutation is identified in a Sudden Arrhythmia Death Syndromes (SADS) patient and it is unclear whether the mutation is the cause of the disease. Family members are then asked to consider genetic testing to ascertain the client’s genetic status and future risk. The paper examines, at the interactional level, how genetic counselors, clients and family members negotiate decision-making involving others. The data consists of 23 video-recorded consultations obtained from a Hong Kong hospital. Episodes of decision-making about testing are identified and extracted from the transcribed data. By using theme-oriented discourse analysis (Roberts & Sarangi 2005), the analysis focuses on the discourse strategies that participants employ to foreground the possible benefits when other family members undergo the genetic test. Preliminary findings show a disjuncture of perspectives between genetic counselors and family members in terms of the benefits of testing. While genetic counselors see testing as a means of confirming the diagnosis and managing risk, family members voice concerns about the usefulness of the test for a client’s treatment. To mitigate these different perspectives on DOT, participants use a range of discourse strategies, such as contrast, foregrounding, self-and-other construction (Sarangi 2010) as a way of emphasizing future scenarios. This study, in sum, elucidates how other-oriented decisions are made in the clinical setting.