‘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.

Keywords:

• risk
• risk communication
• risk of knowing
• decision-making
• prenatal screening
• theme-oriented discourse analysis
• Hong Kong

Acknowledgements

We wish to acknowledge the participants of this project, who allowed us to have their interactions video-/audio-recorded, and the members of the research team Dr. Mary Tang Hoi-Yin, Dr. C.P. Lee and Ms. Vivian Chan. Thanks are also due to the project research assistant Ms. Carina Clark for her assistance with the preparation of this manuscript.

Funding

This work was fully supported by the Hong Kong Research Grants Council of the Hong Kong Special Administrative Region, China [project no. HKU 754609 H].

Notes

^1. Since July 2010, prenatal screening programme in Hong Kong has undergone a reform: currently screening is offered to all pregnant women. The screening options that women are offered include the measurement of the foetal nuchal translucency and blood tests. Those women whose risks are estimated as ‘high-risk’ are subsequently offered further diagnostic testing.

^2. The diagnostic testing options offered to ‘screen positive’ women include CVS and amniocentesis. Both procedures involve a fine needle that is inserted through a woman’s abdominal wall into the uterus. Due to their invasive nature, there is a small risk of miscarriage associated with the procedures (about 0.5–1%) (Lee et al. 2009).

^3. According to the regulations of the Ethics Committee of the authors’ institution and a relevant cluster of the Hospital Authority of Hong Kong, the study was reviewed and approved annually throughout its duration.

^4. Part of this example is also analysed in Zayts et al. (2012).

^5. Part of this example is analysed in Pilnick and Zayts (2012).