Mr. F, a 42-year-old man, and his 21-year-old son George, come to a genetic testing center for advice.
George wants to be tested for Huntington disease, a progressive, fatal inherited brain disorder that has no cure or treatment. It usually strikes its victims in their 30s, 40s and 50s. There is a 50% chance that Mr. F, has inherited the gene and a 50% chance that he has passed it to George.
Mr. F doesn't yet show symptoms of the disease, and he doesn't want to be tested. He prefers to live his life and make decisions without knowing whether or not he has the gene.
George, on the other hand, wants to know if he has inherited the gene so he can plan his life accordingly. If George gets tested and is found to carry the gene for Huntington disease, his father, Mr. F, must also carry the gene. The two men agree that, given their close relationship, it would be impossible for George to keep his test result a secret from his father.
Visitors Responding: 1223
Responses containing narratives: 58%
1. Does George have a right to know whether or not he carries a disease gene even if it interferes with his father's wish not to know his genetic status?
Yes: 95% No: 3% Unsure/no response: 2%
2. Does Mr. F have a right not to know?
Yes: 89% No: 6% Unsure/no response: 5%
3. Would you want to know?
Yes: 65% No: 20% Unsure/no response: 15%
This case study, provided by the U.C. Berkeley Program in Genetic
Counseling and Georgetown University Medical Center, is based on a real