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The role of experiential knowledge in the reproductive decision making of families genetically at risk : the case of spinal muscular atrophy

By Felicity K. Boardman


This study reports on the analysis of 59 in-depth interviews conducted with\ud people diagnosed with, or from families affected by, Spinal Muscular Atrophy\ud (SMA). It focuses on attitudes towards, and actual uses of, prenatal testing\ud and selective termination for SMA in reproductive decision making for this\ud group of people, in order to focus on the role of experiential knowledge of\ud SMA and its relationship to expert medical knowledge, within these highly\ud complex decisions.\ud Experiential knowledge has been described in the literature as knowledge\ud derived from experience, whether ‘embodied’ (i.e. sensory) or ‘empathetic’\ud (i.e. based on the experiences of others). Experiential knowledge has\ud frequently been positioned as being in opposition to, or even conflicting with,\ud medical knowledge, particularly by feminists and disability rights supporters,\ud for whom the tensions between experiential knowledge and medical\ud knowledge have political significance. However, this research found the\ud relationship between expert and experiential knowledge to be both fluid and\ud dynamic, which had important implications for the way in which SMA was\ud conceptualised, understood and responded to by families living with it.\ud Whilst participants’ accounts of SMA were thoroughly grounded in their day-to-day realities with the condition, this knowledge always existed in and\ud through a relationship with expert medical knowledge of SMA.\ud The inherent uncertainties within and between experiential and expert\ud knowledge, and the ways of conceptualising SMA that emerged from them,\ud however, rather than alleviating, instead contributed to, and heightened, some\ud of the social, ethical and moral dilemmas these families experienced around\ud reproductive decision making. Indeed, many participants became trapped\ud within these ways of knowing SMA and the internal contradictions they\ud contained, whilst for others, the strategic privileging of one form of\ud knowledge as ‘authentic’ over the other became the only way to escape some\ud of these dilemmas, and clarify where their reproductive responsibilities lay

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