Scenario #1 - GENETICS TESTING

These scenarios are based on actual case studies or current events., provided by UC Berkeley Program in Genetic Counseling and Georgetown University Medical Center. Feel free to post your comments and compare your viewpoint with other on-line visitors. All (reasonable) comments below are posted to the ETHEX listserv.

GENETICS TESTING

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 usually strikes its victims in their 30s, 40s and 50s.

There is a 50% chance that Mr. F has inherited the gene for Huntington disease and, if so, a 50% chance he has passed it along to his son 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.

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?

Does Mr. F have a right not to know?

Would you want to know?

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Polling

Although we have already asked you to comment on the questions above, we'd also like to tally your simple yes/no answers for a quick "ethics election." So if you don't mind, would you please click your answers again below.

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

Does Mr. F have a right not to know?

YES

Would you want to know?

YES

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