Enacting genetic responsibility: experiences of mothers who carry the fragile X gene

A woman who carries the gene for fragile X syndrome (FXS) has a 50 per cent chance per pregnancy of passing the gene to her sons and daughters. In this paper we analyse interview data from mothers who are carriers of the FX gene, and who have at least one child with FXS, to examine how their understandings and enactments of reproductive options, obligations, and responsibilities support an expanded notion of genetic responsibility. Accounts of 108 women from across the United States show that the majority of mothers chose not to have another biological child once they learned their carrier status. They discussed genetic responsibility and reproductive agency in terms of an obligation not to risk having another child who carried the gene, although their accounts reflected the tensions that arose from managing oneself as a genetically at-risk actor. Another 22 mothers either purposely became pregnant or continued an unplanned pregnancy after finding out their carrier status. These mothers' accounts reflect an expanded version of genetic responsibility that incorporates ideas and values beyond managing risk in what it means to act responsibly in light of genetic knowledge.