Background: Guilt and Inherited Diseases
Parents of children with genetic or inherited diseases often experience guilt or feel at fault, even if they unknowingly passed a “faulty gene” or disease to their children (McAllister et al., 2007, p. 2655). This is illustrated in one study where a woman interviewed about her son’s genetic disease indicated the following: “You know, it happens with all genetically linked conditions, doesn’t it? I mean, I work with cystic fibrosis, and I’ve sat and told parents, ‘It’s not your fault, don’t feel guilty.’ But you still do. You get that sort of feeling about it” (Chapple et al., 1995). These guilty feelings, even if a parent recognizes that they are irrational or unwarranted, can lead to additional mental health concerns, such as depression and anxiety (Onel et al., 2026, p. 52).
A Patient Experience
A woman is finally diagnosed with von Willebrand disease after experiencing heavy menstrual bleeding for most of her life. When she learns that the condition is inherited, the woman requests that her daughter be tested, and the test indicates that she also has von Willebrand disease. In a follow-up appointment with her daughter’s physician, the woman expresses immense guilt about passing the genetic condition to her child despite living an active, relatively normal life herself.
Reflection
- How might the physician validate what the woman is feeling and experiencing without downplaying her concerns?
- What resources could be offered to the patient to help mitigate the guilt she is experiencing, especially since it could result in additional mental health concerns? How should the physician follow up with the patient after the encounter, if at all?
- How might the physician facilitate a discussion surrounding the woman’s fears about her daughter’s future health?
References
- McAllister, M., Davies, L., Payne, K., Nicholls, S., Donnai, D., & MacLeod, R. (2007). The emotional effects of genetic diseases: Implications for clinical genetics. American Journal of Medical Genetics,143A(22), 2651-2661. https://doi.org/10.1002/ajmg.a.32013
- Chapple, A., May, C., & Campion, P. (1995). Parental guilt: The part played by the clinical geneticist. Journal of Genetic Counseling, 4(3), 179-191. https://doi.org/10.1007/BF01408408
- National Bleeding Disorders Foundation. (n.d.). Von Willebrand disease.
https://www.bleeding.org/bleeding-disorders-a-z/types/von-willebrand-disease - Onel, A.E., Zengin, D., & Yilmaz, H.B. (2026). Guilt in parents of children diagnosed with hemophilia: A qualitative study. Journal of Pediatric Nursing, 86, 51-59. https://doi.org/10.1016/j.pedn.2025.10.032