Stigma and Genetic Risk: Perceptions of Stigma among Those at Risk for Huntington Disease (HD)

@article{Etchegary2007StigmaAG,
  title={Stigma and Genetic Risk: Perceptions of Stigma among Those at Risk for Huntington Disease (HD)},
  author={Holly Etchegary},
  journal={Qualitative Research in Psychology},
  year={2007},
  volume={4},
  pages={65 - 84}
}
  • H. Etchegary
  • Published 7 August 2007
  • Psychology
  • Qualitative Research in Psychology
Advances in molecular genetics raise concerns about the potential for stigmatization of people at risk for genetic disorders. However, minimal research explores stigma from the perspective of people who live with genetic risk. Drawing upon 24 semi-structured interviews with at-risk people and their family members, this study explored perceptions of stigma in the context of Huntington disease (HD), a fatal genetic illness. Qualitative data analysis revealed four perceptions of stigma: 1… 
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15 Citations

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Citation Type

Normalising life at risk of Huntington's disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination.
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'Normalising genetics' appears to be particularly challenging considering the remaining stereotypes and stigma surrounding genetic diseases, and insight into the strategies participants use to cope with these fears is provided.
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Interviews were conducted with members of 20 families, including affected males, to explore their experiences of life with hypohidrotic ectodermal dysplasia (HED), which impacts physical appearance.…
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This article examines the implications for parents and family members when a child is diagnosed with a genetic syndrome. In particular, it describes how practices of understanding are shaped when the…
Making sense of a ‘de novo’ genetic syndrome: genetic responsibility and the enduring significance of ‘family’
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How practices of understanding are shaped when the syndrome occurs ‘de novo’ is described, that is, when it has not been inherited from either parent and where there is no family history.
Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together
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It is suggested that management of information in the family started with the search for a diagnosis in an affected family member, which activated a transgenerational process to understand HD in thefamily context, marked by improved awareness and different ways family members manage it.
Dilemmas of stigma, support seeking, and identity performance in physical disability : a social identity approach
Physically disabled people belong to a stigmatised group that is subject to negative societal stereotypes of incompetence and dependency on others. In order to maintain a positive sense of self, as…
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Family Communication of Genomic Information
TLDR
There is a paradoxical situation in which family information is often pivotal in risk assessment procedures, but an individual consultand, whose genetic status may have been clarified through the sharing of “family information,” may also have the right to prevent disclosure of what is now “personal information” to other family members.
Functions of health fatalism: fatalistic talk as face saving, uncertainty management, stress relief and sense making.
TLDR
This study analyses 96 in-depth lay interviews in the US, most with low-income members of the general public, about four diseases: heart disease, lung cancer, diabetes and depression, finding fatalistic statements always occurred alongside statements endorsing the utility of behaviours for protecting health.
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