Winner of Fawzia Braine Memorial Award for 2013/14 - Alice Yau of The University of Hong Kong

‘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. In Health, Risk, and Society.

Alice Yau & Olga Zayts / The University of Hong Kong

Abstract In this paper, we examine the ‘risk of knowing’ talk (Sarangi et al. 2003, 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 and Zayts 2012). 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 and Sarangi 2005), 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.

Alice YAU is a PhD candidate at the Centre for the Humanities and Medicine, the University of Hong Kong. Her dissertation focuses on risk and responsibility in the context of telegenetic counselling. The paper that this presentation is based on is a co-authored publication forthcoming in Health, Risk and Society (Co-authored with Dr. Olga Zayts). Miss Alice Yau is the recipient of the Fawzia Braine Memorial Award for the Best Journal Article Published by a Novice Scholar (2013/2014).

Birthday celebration, possibly 2008

The Second Anniversary

A large number of relatives attended Islamic prayers conducted at the home of Mrs. Mahamoor at Ragama. Mrs. Mahamoor is Fawzia's aunt. Fawzia's body lay overnight at the home before being taken for burial at Raddolugama, near Seeduwa.

A memorial service for Fawzia was conducted at the chapel of St. Joseph's Home for the Elders in Marawila. Following the service, a special lunch was offered to the 150 elders, both male and female, at the home. Family members and friends who attended the service joined the Reverend Sisters for lunch.

Every month, the elders are provided with two days of meals in Fawzia's memory.

In happier times. Fawzia with Sr. Maris Stella and Sister Maria from the St. Joseph's Home. The nuns were fond of Fawzia.

Beijing Visit April 2004

We visited Beijing with Junju Wang, my PhD student. She is from Jinan, in Shandong Province, but accompanied us to Beijing to show the sights.

These photos were taken at Beijing Normal University, where wee stayed.  Two of their professors completed their PhDs at the Chinese University of Hong Kong.

Dinner with old friends Jun Liu and Jetta Hansen. Jun later became the President of TESOL.

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At the infamous Tiananmen Square. Fifteen years earlier, on June 4, 1989, hundreds if not thousands of protesters, including students, were killed here.

At the Great Wall.