The emotional effects of genetic diseases: Implications for clinical genetics

Authors

  • Marion McAllister,

    Corresponding author
    1. Nowgen, The North West Genetics Knowledge Park, Manchester, UK
    2. Central Manchester and Manchester Children's University Hospitals NHS Trust, Manchester, UK
    3. Academic Unit of Medical Genetics, The University of Manchester, Manchester, UK
    • The Nowgen Centre, 29 Grafton Street, Manchester M13 9WU, UK.
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  • Linda Davies,

    1. Nowgen, The North West Genetics Knowledge Park, Manchester, UK
    2. Health Economics Research at Manchester, The University of Manchester, Manchester, UK
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  • Katherine Payne,

    1. Nowgen, The North West Genetics Knowledge Park, Manchester, UK
    2. Academic Unit of Medical Genetics, The University of Manchester, Manchester, UK
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  • Stuart Nicholls,

    1. Nowgen, The North West Genetics Knowledge Park, Manchester, UK
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  • Dian Donnai,

    1. Nowgen, The North West Genetics Knowledge Park, Manchester, UK
    2. Central Manchester and Manchester Children's University Hospitals NHS Trust, Manchester, UK
    3. Academic Unit of Medical Genetics, The University of Manchester, Manchester, UK
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  • Rhona MacLeod

    1. Central Manchester and Manchester Children's University Hospitals NHS Trust, Manchester, UK
    2. Academic Unit of Medical Genetics, The University of Manchester, Manchester, UK
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  • How to cite this article: McAllister M, Davies L, Payne K, Nicholls S, Donnai D, MacLeod R. 2007. The emotional effects of genetic diseases: Implications for clinical genetics. Am J Med Genet Part A 143A:2651–2661.

  • The views expressed in this article are those of the authors and not those of the funding bodies.

Abstract

The aim of this qualitative study was to explore the emotional effects that may be common to many genetic conditions, or risk of genetic conditions, that could be appropriately targeted by clinical genetics services. The study sample comprised 52 individuals. Seven focus groups with patients of clinical genetics services, their representatives from patient support organizations and genetics healthcare providers were conducted. Focus groups were supplemented by 19 face-to-face interviews with patients and patient group representatives. Focus groups and interviews were audio taped, transcribed in full, and analyzed using the constant comparative method. Eight emotional effects of genetic diseases were identified: anxiety, worry about risks to children, guilt, anger, uncertainty, sadness and grief, depression, and redemptive adjustment. Two factors were identified that could modify the emotional effects; these were variability of genetic diseases, and lack of diagnosis/inappropriate care. Despite many negative effects of genetic disease being identified, results also suggest that redemptive adjustment is possible where a genetic condition is present in a family. Interventions designed to (1) adjust the modifying conditions and (2) help manage the emotional effects may facilitate adjustment and improve patient outcomes. © 2007 Wiley-Liss, Inc.

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