Exploring shared decision-making in genetic counseling for non-invasive prenatal testing (NIPT) in Mainland China: a discourse analytic perspective

Abstract

The discovery of cell-free fetal DNA in maternal blood two decades ago laid the base for developing non-invasive prenatal testing (NIPT), which helps prospective parents to determine the risk for fetal chromosomal abnormality early in pregnancy. Since its introduction to clinical practice in Hong Kong in 2011, NIPT has significantly changed the paradigm of prenatal screening, and is now offered in more than 60 countries. In addition to global trends to commercially promote NIPT, there are also plans in some countries to introduce the testing into routine state-funded prenatal care. While applauded for its safety as well as high accuracy rate, NIPT is also reported to have posed some technical, ethical and moral challenges to healthcare providers and prospective parents (e.g., false positive/negative rate, informed decision-making, eugenics) (Hui & Hyett 2013), which warrant further research by academics and practitioners. There is a substantial body of communication-oriented research on prenatal testing and screening (e.g., Pilnick & Zayts, 2012), and in the last decade, an increasing number of medical studies on NIPT (e.g., van Schendel et al., 2015). There are still some research gaps to be bridged between communication-oriented and medical research studies. First, previous communication studies have predominantly examined more traditional screening procedures (e.g., ultrasonography, maternal serum screening). Second, most of the studies on NIPT are outcomeoriented, typically utilizing surveys to address the outcome, or the impact of communication, such as attitudes, uptake of testing, while neglecting the communicative processes, as well as the specific communicative contexts of NIPT consultations. In this vein, this study adds to existing literature by exploring the less empirically studied naturally occurring consultations for NIPT from a process-oriented perspective. The study site in a major city in Mainland China provides a particular interesting location, given limited research on NIPT in this part of the world, and its local government policy to provide the testing with high public insurance coverage. A corpus of recorded prenatal genetic consultation sessions for NIPT are drawn from an ongoing research project. By adopting ethnographic fieldwork and theme-oriented discourse analysis (Roberts & Sarangi, 2005) as the analytical framework, this paper examines how shared decision-making is facilitated and enacted in the context of genetic counseling for NIPT, as well as how expectant parents navigate various information resources and orient themselves to and negotiate decision-making regarding this testing option. References: Hui, L., & Hyett, J. (2013). Noninvasive prenatal testing for trisomy 21: challenges for implementation in Australia. Australian and New Zealand Journal of Obstetrics and Gynaecology, 53(5), 416-424. Pilnick, A., & Zayts, O. (2012). ‘Let’s have it tested first’: choice and circumstances in decision making following positive antenatal screening in Hong Kong. Sociology of health & illness, 34(2), 266-282. Roberts, C., & Sarangi, S. (2005). Theme oriented discourse analysis of medical encounters. Medical education, 39(6), 632-640. van Schendel, R. V., Dondorp, W. J., Timmermans, D. R., van Hugte, E. J., de Boer, A., Pajkrt, E., … & Henneman, L. (2015). NIPT based screening for Down syndrome and beyond: what do pregnant women think?. Prenatal diagnosis, 35(6), 598-604.