This expectation is not a surprise. This ethical principle is called ‘single use’ of data.
Humans expect to set and regulate personal boundaries in relationships with others. We only trust people and institutions that don’t share sensitive personal information without asking us first.
People don’t trust governments or corporations that violate their expectations and rights to privacy, ie, rights to control the use of personal data.
When the US public realizes their rights to health information privacy are violated by hidden government and corporate use and sale of their most intimate, sensitive information: health data, from prescriptions to diagnoses to DNA—the fallout will be far more devastating than the NSA revelations.
After all, Americans expect some level of government surveillance to protect us from terrorism, but the hidden collection and sale of health data by industry and government is very different: it completely shatters trust in the patient-physician relationship. The lack of trust in electronic health systems already causes 40-50 million people to delay or avoid treatment for serious illnesses, or to hide health information. Current technology causes bad health outcomes.
The Internet and US health technology systems are currently designed to violate human and civil rights to privacy. The Internet and technology must be rebuilt to restore trust and restore our rights to control personal information.