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.
Article first published online: 15 OCT 2007
Copyright © 2007 Wiley-Liss, Inc.
American Journal of Medical Genetics Part A
Volume 143A, Issue 22, pages 2651–2661, 15 November 2007
How to Cite
McAllister, M., Davies, L., Payne, K., Nicholls, S., Donnai, D. and MacLeod, R. (2007), The emotional effects of genetic diseases: Implications for clinical genetics. Am. J. Med. Genet., 143A: 2651–2661. doi: 10.1002/ajmg.a.32013
The views expressed in this article are those of the authors and not those of the funding bodies.
- Issue published online: 25 OCT 2007
- Article first published online: 15 OCT 2007
- Manuscript Accepted: 27 JUN 2007
- Manuscript Received: 8 NOV 2006
- UK Department of Health
- UK Department of Trade and Industry, Central Manchester and Manchester University Hospitals NHS Trust
- Universities of Manchester, Liverpool, and Lancaster
- clinical genetics services;
- emotional effects;
- qualitative research;
- focus groups;
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.