With the exception of gun owners, no such protections are spelled out in the health reform bills. With the new networks, a much wider pool of eyeballs will start peering into patient records for both care and research purposes. The records will be loaded with straightforward stuff, and some secrets, at a level of detail never before available. Promises of secure and private electronic records in a world of clever hackers do not entirely ease patient concerns. As long as electrons are flowing, their coded sensitive information just might be inappropriately or accidentally disclosed.
I wager every person has something in that medical history or family record that he or she wants held secret, even if someone else would not: a history of severe depression, a loved one who committed suicide, a full bevy of sexually transmitted diseases, or an abortion that a woman would like to forget. Incontinence, impotence, or a penile prosthesis—are these anybody's business? No. Nor are the manifold decoded bits of DNA that might forecast a risk for nasty conditions like Alzheimer's or stroke, a subnormal IQ, or an early death. Then there are illegal habits like marijuana and cocaine use. But touchy, too, are the plain-vanilla medical frailties that people have long had the unquestioned right to keep private. It's an old saw that when a patient tells you how many drinks he or she has in a week, at least double it.
The health information technology leaders now busy at work are fully aware of the risk of bungling security and privacy as they develop a national communication network that would link, for generations to come, all elements of the healthcare community. But it's really important that the technology mavens, policymakers, and politicians alike understand clearly how high the stakes are: Doctors well know that the most fragile link in a massive new system that ultimately depends on people being forthcoming is going to be the trust of the patient. Once lost, it is hard to regain.
Honoring a patient's right to hold back personal information he or she worries is too sensitive solidifies that trust. This acceptance may not be chiseled in law as the gun owners have achieved. But it is crucial that it prevail.