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Title: Ethical and psychosocial aspects of appearance associated with ectodermal dysplasia
Author: Brant , Heather Dawn
Awarding Body: University of Bristol
Current Institution: University of Bristol
Date of Award: 2013
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Some people report a number of negative psychosocial outcomes associated with living with a visible difference. There is, however, little research into whether such effects are also experienced by those living with a genetic condition that affects appearance, and no research into the associated ethical issues. This interdisciplinary study accordingly investigates the ethical and psychosocial aspects of living with a visible difference associated with a specific genetic condition, Ectodermal Dysplasia (ED). The enquiry employed a critical applied ethics approach integrating empirical exploration with theory. Semi-structured interviews were conducted with thirteen people with ED and twelve clinicians in the field of ED, and analysed using inductive thematic analysis. Three key concepts emerged from the data: wellbeing and identity, which were related to living with a visible difference that consequently influenced reproductive choice. Appearance was found to be an indirect factor influencing reproductive choice through its association with wellbeing and identity. These findings were then synthesised with the existing psycho-social and ethical literature. The synthesis of the findings with the existing literature led to theories of wellbeing, identity and reproductive choice that reflected the multi-faceted nature ofthese concepts. Therefore, a relational and virtue ethics account was most appropriate for reproductive choice, subjective and objective (hedonic and eudaimonic) components were required in a comprehensive theory of wellbeing, alongside a combined theory of identity that incorporated embodiment, narrative identity, and symbolic interaction ism. This thesis therefore presents evidence from a previously under-reported subject matter, providing the reader with a novel overview of the experience of living with ED. Possible future research lines are identified, and the data and arguments provided here offer a platform for future practice and policy, by informing clinicians, policy makers, academics, those who have ED and their associates about the challenges that people with ED may face.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available