In Seattle, a man in his late thirties continued to tell friends he carried the Huntington's mutation three years after testing negative. The man, says genetics counselor Robin Bennett, had led a partying lifestyle based on the assumption that he would die young. Admitting that he did not carry the mutation would have forced him, in essence, to adjust his values, Bennett says. In Pennsylvania, a woman who tested negative for the Huntington's mutation suddenly felt ashamed to be with her sister, who had tested positive. The dilemma for doctors Gene tests are creating challenges for doctors and genetics counselors, who are sworn to respect patients' privacy.
Patient confidentiality is paramount.
To avoid being placed in such positions, some medical professionals have refused to give gene tests unless patients agree to share the results with their relatives. Last year, Michelle Wagner of Mesa, Ariz., had difficulty finding a lab to test her for Huntington's disease unless her mother agreed to be tested at the same time. Wagner tested negative for the Huntington's mutation. Her mother, however, tested positive. That put Wagner's older sister and younger brother on the spot.