This narrative tells the story of Mackenzie, who, from a young age, was actively involved in raising awareness and support for Huntington’s Disease (HD) due to its prevalence in their family. Mackenzie’s mother, grandfather, and aunt had all been affected by HD, prompting a personal decision to undergo predictive genetic testing at the age of 18. Contrary to expectations, Mackenzie tests negative for the HD gene, leading to a profound shift in life plans and a reevaluation of personal goals. The narrative explores the complex emotional aftermath, including feelings of being lost and survivor’s guilt. Despite the challenges, Mackenzie discovers a renewed purpose in advocating for the HD community and gratitude in the knowledge gained through genetic testing.
Students can analyze the challenges and opportunities presented by genetic testing, exploring the impact of results on personal identity, life goals, and community engagement. The narrative also raises important ethical considerations surrounding predictive testing and the potential psychological effects on patients.
Access
- Link: https://myfaultygene.org/mackenzie/
Details
Language: English
Type of Story: Blog Post and Brief story
Medium: written
Contributed by: Willow Irving
Citation:
Mackenzie – My Faulty Gene. (n.d.). Retrieved December 5, 2023, from https://myfaultygene.org/mackenzie/