Accepted paper:

"You are not ready to be a mum if you are not listening to a medical professional say it is not safe": how 'reproductive responsibility' affects family-building choices in women with Turner Syndrome

Author:

Kristine Fearon (De Montfort University)

Paper short abstract:

This paper uses the concept of 'reproductive responsibility' (Novas and Rose, 2000), the perceived reproductive obligations that follow from genetic knowledge, to discuss the gendered nature of women's choices around reproduction in the context of Turner Syndrome (TS).

Paper long abstract:

This paper uses the concept of 'reproductive responsibility' (Novas and Rose, 2000), the perceived reproductive obligations that follow from genetic knowledge, to discuss the gendered nature of women's choices around reproduction in the context of Turner Syndrome (TS). TS is a non-heritable chromosome disorder affecting females; 90% of girls are born without ovaries, or their ovaries fail before puberty.

Developments in reproductive technology bring increasingly complex family-building choices. In addition to egg donation or adoption, reproductive preservation techniques introduce the potential for some pre-pubertal girls to freeze their own ovarian tissue or ovaries for reimplantation in adulthood, while some mothers of girls with TS have frozen their eggs for their daughter's use in later life. The perceived benefits of pregnancy are balanced against significantly higher rates of miscarriage and maternal death (Abir, 2011; Karnis, 2012).

This paper examines how TS affects women's choices around disclosure, relationship formation and family building. It further explores how perceived expectations of mothers affect the decision of mothers of girls with TS to freeze their eggs. Finally, it addresses the gendered aspects of reproductive responsibility and how it is predominantly assumed by women with TS and their mothers.

panel F05
Promissory encounters? Exploring innovations at the intersection of reproduction and genetics from a feminist STS perspective