U.S. Surgeon General Richard H. Carmona has a swell idea for how we should spend the Thanksgiving holiday. He’s declared Thanksgiving the first annual National Family History Day. According to the Department of Health and Human Services, “Americans are encouraged to use their family gatherings as a time to collect important family health history information that can benefit all family members.”
As tempting as it sounds, I doubt that families throughout America will be eager to put aside football and the traditional reminiscing over turkey dinner to catalogue the diseases that have afflicted their recent and distant ancestors. But there is a much more serious reason to be wary of Carmona’s suggestion.
It is certainly a good idea to know one’s family medical history. As Carmona says, “When a health-care professional is equipped with a patient’s family health history, he or she can easily assess the inherent risk factors and begin tests or treatment even before any disease is evident.” But because the government is so deeply involved in our medical affairs, what is sensible in principle is folly in practice.
There was a time when what you told your doctor was confidential. The information could not be passed on without your consent. But no more. The federal government’s misnamed “medical-privacy rule” changed all that. Now whatever you tell your doctor can end up in lots of people’s computers without your permission or, in many cases, your knowledge. Under this rule, says Sue A. Blevins, president of the Institute for Health Freedom, “the information can be shared with over 600,000 hospitals, doctors, insurers, medical data-processing companies, public-health departments, and others without the individual’s consent.” Patients are not even owed an accounting of how their personal information was distributed for most purposes. All this is compliments of a government that claims to be protecting our privacy.
According to officials, a thorough family medical history includes not only heart disease, diabetes, cancer, high blood pressure, and the like. It also includes so-called mental diseases, such as depression and schizophrenia, which actually are names for bothersome behavior and statements, not bona fide physical ailments. A person who confides to his doctor that his grandfather was depressed or committed suicide could be compromising himself in untold ways. The Bush administration is already pushing to have general practitioners look for signs of mental illness in all patients, including children. If this happens, perfectly well people will be stigmatized and possibly subjected to powerful drugs.
Government actions always have perverse and unintended consequences. When people realize that they have no confidential relationship with their doctors, they will have an incentive to provide inaccurate information when asked for a family history. What will the coming comprehensive computerized medical databases be worth then? It’s hard to see how they will help make people healthier.
One health-policy expert I know has a better idea: “I think the surgeon general has a duty to warn the American public about how the so-called federal medical-privacy rule is really a data-sharing rule because it eliminates patient consent. Perhaps we need a surgeon general’s warning that says something like, ‘Warning: The Surgeon General has determined that under federal law, anything you tell your doctor can be shared without your consent or knowledge.’”
Those words should be posted outside every doctor’s office.
Leave it to the government to turn prudence into foolishness. Our wise leaders have left us at an uncomfortable fork in the road: We can have doctor confidentiality and accurate medical information or the bogus federal medical “privacy” rule. We can’t have both.
