Title:
|
Ethical and psychosocial aspects of appearance associated with ectodermal dysplasia
|
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.
|