One of the major barriers to accelerating medical research through massive anonymous databases of treatment and outcome data is the fear of sacrificing privacy. It’s an entirely reasonable concern to fear being discriminated against for pre-existing conditions when applying for insurance.
The good news is that the Affordable Care Act, passed in 2010, made it illegal for insurers to deny you coverage or charge high rates for pre-existing conditions. Additionally, if your health changes and you develop a chronic medical condition while enrolled in a health plan, your insurance carrier cannot raise your rates because of that medical condition. However, annual premium increases may apply to your plan for other reasons.
Additionally, the expectation that privacy could protect you from your insurance company is simply wrong. Your insurance company most likely knows more about your health conditions than you do. I downloaded all the medical records that my insurance company had made available on their website. It consisted of 51 pages of diagnoses, prescriptions, and diagnostic test results.
My insurance company knew about several conditions that I didn’t even know I had. They apparently receive the full interpretations of MRI scans and radiological examinations. In those, it was observed that I have severe degeneration of the cervical disks in my upper spine, osteoporosis, and damage to my spinal cord (spondylosis). I was never made aware of any of this, but my insurance company certainly was.