Abstract
Practical experience of a genetic disorder may influence how parents approach reproduction, if they know their child may be affected by an inherited condition. One important aspect of this practical experience is the stigmatisation which family members may experience or witness. We outline the concept of stigma and how it affects those in families with a condition that impacts upon physical appearance. We then consider the accounts given by females in families affected by the rare sex-linked disorder, X-linked hypohidrotic ectodermal dysplasia (XHED), which principally affects males but can be passed through female carriers to affect their sons. The stigmatisation of affected males is as important in the accounts given by their womenfolk as the physical effects of the condition; this impacts on their talk about transmission of the disorder to the next generation.Perspectives may also change over time. The mothers of affected sons differ from their daughters, who do not yet have children, and from their mothers, who may express more strongly their sense of guilt at having transmitted the condition, despite there being no question of moral culpability. We conclude with suggestions about other contexts where the possibility of stigma may influence reproductive decisions.
Highlights
Reproduction is an important aspect of personal identity, especially in families impacted by genetic disease, where the risk of transmitting an inherited disorder to one's children is not merely a biological and a social fact, with important consequences for relationships and family life
In this paper we have considered the nature of stigma in genetic disorders of visible difference and how, alongside the physical, health consequences, this may impact on feelings about reproduction in families affected by X-linked hypohidrotic ectodermal dysplasia (XHED)
With such sex-linked disorders, the mothers of affected boys may be seen as bearing responsibility in several ways: biological responsibility for transmitting the disorder, responsibility for the practical care of affected boys and, as women are often the “kin-keepers” (Green et al, 1997), for the active communication about the condition with others in the extended family
Summary
Reproduction is an important aspect of personal identity, especially in families impacted by genetic disease, where the risk of transmitting an inherited disorder to one's children is not merely a biological and a social fact, with important consequences for relationships and family life These consequences vary with the culture and with the mode of (biological) inheritance and the age and manner in which the condition becomes manifest. We have previously shown that males affected by a rare sexlinked disorder, X-linked hypohidrotic ectodermal dysplasia (XHED), experience stigmatisation and that this impacts on how they view their lives. This in turn has implications for their attitudes towards transmitting the condition to future generations (Clarke, 2013). The majority survive and learn to manage these physical challenges (Clarke et al, 1987), with the survivors often reporting stigmatisation for their physical (especially facial) features
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