‘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

The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

“…This dilemma could also be seen as a choice between two types of risk: the risk of knowing vs. the risk of occurrence (to have a child suffering from a disease). As an observational study in a genetic counseling setting in a Hong Kong hospital revealed, the risk of knowing was mainly put forward as an argument when clients wanted to signal their responsible accountability not to test (Yau and Zayts, 2014). A particular implication of reproductive GR was evoked in families with children who had a serious, untreatable recessive disease such as spinal muscular atrophy (Boardman, 2014b).…”

“…The decisions and actions described were more negative-selective (e.g., deciding for abortion or for relinquishment) than positiveselective (e.g., actively choosing one's children's genetic make-up). Some studies examined explicitly how these private decisions by the parents were influenced indirectly by public discourse and not-as in the case of classic eugenics-explicitly enforced by state authorities (Boardman, 2014b;Yau and Zayts, 2014;Hoeltje and Liebsch, 2015). Another group of studies focused on the role of "experienced knowledge" of the illness within the family and how this influenced reproductive decisions.…”

“…Similar to the context of disclosing genetic risk in the family, some studies focused on a rational/principle-oriented approach to responsibility (n = 6, code B4a) (Ekberg, 2007;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014) and some on an affective/relational approach (n = 5, code B4b) (van Berkel and Klinge, 1997;Downing, 2005;Reed, 2009;Atkin et al, 2015;Hoeltje and Liebsch, 2015).…”

“…The studies in the field of reproductive GR fell into two subcategories: studies focusing on the process of making a decision about having a child if the risk of having a baby with a genetic disease was considerable (n = 7) (Downing, 2005;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014;Hoeltje and Liebsch, 2015) and studies using gender as a category to investigate the role of future parents in the context of prenatal genetic screening procedures (n = 3) (van Berkel and Klinge, 1997;Reed, 2009;Atkin et al, 2015). In addition, one study approached reproductive GR indirectly via the perceptions and opinions of genetic counselors (Ekberg, 2007).…”

5. Laughter as a “serious business”: Clients’ laughter in prenatal screening for Down’s syndrome

“…miscarriage]), the "risk of knowing" (psychosocial and interpersonal implications that finding out about abnormalities via testing may have on a client and the family) (Sarangi et al 2003), and the "risk of not knowing" (psychosocial implications of not pursuing any testing [e.g. increased anxiety]) (see also Pilnick and Zayts 2014;Yau and Zayts 2014). Naturally, this relatively high amount of risk talk may easily lead to a heightened anxiety among the clients that may be both explicitly lexicalized by them (e.g.…”