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Eur J Hum Genet. 2019 Feb 4. doi: 10.1038/s41431-019-0353-1. [Epub ahead of print]

Autonomous decision-making for antenatal screening in Pakistan: views held by women, men and health professionals in a low-middle income country.

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University of Leeds, Leeds, UK.
Genetech Laboratory, Lahore, Pakistan.
Central Park Medical College, Lahore, Pakistan.
National University of Singapore, Singapore, Singapore.
Chinese University of Hong Kong, Shatin, New Territories, China.
Fudan University, Shanghai, China.
Yorkshire Regional Genetics Service, Leeds, UK.


Prenatal genetic technologies now are being implemented in LMICs, and while there is much research on the ethical, legal and social implications of such technologies in Western countries, there is a paucity of such research in LMICs, which have diverse cultural, religious, political, financial and health service contexts. This study aimed to explore views about women's autonomous decision-making for antenatal screening held by women, men and healthcare professionals (HCPs) in Pakistan. A Q-methodology study was conducted during June 2016 to January 2018 in Lahore, Pakistan. A total of 137 participants (60 women, 57 men, 20 HCPs) rank-ordered 41 statements. Following by-person factor analysis, four distinct viewpoints were identified. Three of these represent views held by women and men only: autonomous decision-making requires directive advice from doctors; autonomous decision-making requires the husband's involvement, where independent decision-making by the woman is considered culturally inappropriate; and opting for antenatal screening is a foregone decision. One contrasting viewpoint represents predominantly HCPs: autonomous decision-making is the couple's responsibility. These findings highlight that Western approaches to facilitating women's autonomy for antenatal screening are unlikely to be suitable for use in Pakistan. Instead, culturally appropriate practice guidelines are needed in LMICs to enable HCPs to adopt shared decision-making approaches in a way that enables them to facilitate active and joint decision-making by couples, while ensuring women exercise their autonomy.


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