US patients should have the right to refuse to allow their medical records to be shared, says psychiatrist Deborah C. Peel in the Wall Street Journal. “The privacy of an electronic health record cannot be restored once the contents are sold or otherwise disclosed. Every person and family is only one expensive diagnosis, one prescription, or one lab test away from generations of discrimination.”

Dr Peel is worried that the Senate healthcare bill approved by the House of Representatives on Sunday will accelerate a trend to less privacy for medical records. President Obama has vowed ensure that every American has an electronic health record by 2014 and last year's stimulus bill allocated over US$36 billion to build electronic record systems.

But she feels that this is a terrible mistake. Currently prescriptions are data-mined by pharmaceutical companies; lab tests are disclosed to insurance companies; employers can access employees’ records. If people realize that they will lose even more privacy, they may be reluctant to see a doctor at all. A California study in 2005 found that found “that one in eight Americans avoided seeing a regular doctor, asked a doctor to alter a diagnosis, paid privately for a test, or avoided tests altogether due to privacy concerns”.

Dr Peel’s organization, Patient Privacy Rights, wants information technologies which allow patients the option of refusing to share some or all of their medical records. No stimulus package funds should be used to build systems which do not have these safeguards, she says. ~ Wall Street Journal, Mar 23