You are seeing a long-time patient of yours, a 52-year-old male, who has experienced fluctuating vocal weakness for several years. He is a medical device salesman with ample opportunity for vocal usage. In your past examinations, you have noted some subtle weakness of glottic closure with soft vocalization, but no other worrisome findings. The patient has also related over the years that his jogging pace has slowed down, which he had felt was commensurate with his overall physical aging. Today’s examination reveals no new information or findings, but you note that the patient appears to be concerned about something, appearing more serious than usual, and you inquire about what is bothering him.
Explore this issue:July 2017
The patient explains that he has recently become concerned—after researching his symptoms online—that he may have early Parkinson’s disease, given the vocal weakness and his jogging sluggishness. He has become convinced that he is experiencing the early onset of this disease, and without consulting his primary care physician or you, he has ordered, and submitted, a home genetic testing kit to determine whether he has a genetic marker for Parkinson’s disease.
He is now “worried sick” about the forthcoming results and wants you to explain to him how this genetic testing works. Clinically and historically (no history in his family), you believe Parkinson’s disease is a consideration, albeit low, at this time. You really have not taken the time to learn much about the risks and benefits of “direct-to-consumer genetic testing,” so you feel ill prepared to counsel him. You are especially concerned about the ethical implications of individuals receiving this information without any context that might help them to understand the results. How should you respond to the patient?