‘I don’t want to see my children suffer after birth’: the ‘risk of knowing’ talk and decision-making in prenatal screening for Down’s syndrome in Hong Kong

Abstract

In this article, we examine the ‘risk of knowing’ talk (Sarangi, S., et al., 2003. ‘Relatively speaking’: relativisation of genetic risk in counselling for predictive testing. Health, risk & society, 5 (2), 155–170, p. 155) in prenatal screening for Down’s syndrome in Hong Kong. The ‘risk of knowing’ talk refers to the consequences of learning about a health condition, such as the psychosocial and interpersonal implications of testing, and the subsequent management of the condition. The stigma of eugenics and that the termination of pregnancy is the only available ‘medical intervention’ imply that the risk talk and decision-making in prenatal screening carry serious ethical, moral and social implications (Pilnick, A. and Zayts, O.A, 2012. ‘Let’s have it tested first’: choice and circumstances in decision-making following positive antenatal screening in Hong Kong. Sociology of health and illness, 34 (2), 266–282). This issue has not attracted much attention in the previous literature. This study is part of a larger project on prenatal screening conducted in one Prenatal Diagnostics and Counselling Department of a Hong Kong hospital in 2006–2013. It draws on 20 video-recorded consultations with pregnant women who had received a ‘positive’ (high risk) screening result and were invited to consider further diagnostic testing. Using theme-oriented discourse analysis (Roberts, C. and Sarangi, S., 2005. Theme-oriented discourse analysis of medical encounters. Medical education, 39 (6), 632–640), we show that in these consultations, the ‘risk of knowing’ talk was not initiated by the health care professionals. It might, however, be evoked by the women. We examine the impact of the ‘risk of knowing’ on decision-making, and discuss specific discourse (linguistic and rhetorical) devices that the participants employed to negotiate three competing agendas: the health care professionals’ preference of diagnostic testing, clients’ concerns of having a baby with Down’s syndrome and the overarching professional goal of these encounters of facilitating the clients’ informed choice regarding further testing.