Ahmed, Shenaz, Huso Yi, Dong Dong, Jianfeng Zhu, Hussain Jafri, Yasmin Rashid, Olivia MY Ngan, & Mushtaq Ahmed (2018). Interpretations of autonomous decision-making in antenatal genetic screening among women in China, Hong Kong and Pakistan. European Journal of Human Genetics, 26(4), 495-504. (doi: https://doi.org/10.1038/s41431-017-0091-1)

Abstract: The concept of informed choice for antenatal screening consists of Western ideologies, encapsulating individualistic approaches, and may be valued differently by people from countries with more collectivist cultures. This study aimed to explore perceptions of informed choice in antenatal screening in women from China, Hong Kong and Pakistan. A Q- methodology study was conducted during June 2016 to February 2017, in China (Shanghai and Duyun), Hong Kong and Pakistan (Lahore). A total of 299 women rank ordered 41 statements. Following by-person factor analysis, five distinct viewpoints were identified: choice as a maternal responsibility entrusted to doctors; choice as a shared decision led by the mother; choice as a shared decision led by the partner; choice as a responsibility delegated to the partner and doctors; and choice within a religious discourse. The findings highlight ethical dilemmas for healthcare professionals in facilitating informed choice for antenatal screening where policy and practice guidelines adapt predominantly individualistic approaches. Women’s preferences for decision-making with health professionals and/or their partner, with minimal emphasis on individual rights, suggest the need for clarification of the role of health professionals in supporting and facilitating decision-making to enhance women’s autonomy. Policy and practice guidelines need to be (re)framed to facilitate decision-making processes for antenatal screening using relational approaches to autonomy.

Shenaz Ahmed <s.ahmed@leeds.ac.uk> is with the Leeds Institute of Health Sciences, University of Leeds, West Yorkshire, UK.