Family members who are testing to determine whether they carry a genetic mutation for Prion Disease may wish to keep their medical records private when visiting the Genetic Counselor or having blood testing done.
You can request “HITECH” to isolate your medical records so that they are not sent to the insurance company. For this to be most effective, you need to declare that you want HITECH before all clinical visits related to this topic so that clinic notes will also be isolated. This would mean that you would have to pay out of pocket for the clinic visit, too. The results DO appear in the medical record with HITECH, but there is a red banner at the top that says not to release them to insurance companies.
“When individuals pay by cash they can instruct their provider not to share information about their treatment with their health plan. The final omnibus rule sets new limits on how information is used and disclosed for marketing and fundraising purposes and prohibits the sale of an individual’s health information without their permission.”
This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.