From Typhoid Mary To Diabetic Debbie
On Jan. 15, New York City began requiring local clinical laboratories to report to the city health department the results of blood sugar tests performed on citizens. The department plans to use the information to improve surveillance for diabetes, which afflicts an estimated one out of eight New Yorkers and to "target interventions." Specifically, if you live in New York and have trouble resisting sweets, your doctor may soon receive a call from the health department suggesting that he or she needs to persuade you to change your lifestyle.
What makes this development so extraordinary in the annals of American public health is that diabetes is not a disease you can catch from, or give to, anyone else. U.S. governments have a long history of imposing quarantines and otherwise restricting the liberties of people suspected of carrying contagious disease. Early in the last century, for example, the very same New York City health department famously exiled Mary Mallon (aka "Typhoid Mary"), along with many other infectious patients, to a tiny island "colony" in the East River.
Policies that require the reporting of sexually transmitted diseases to public health authorities similarly derive justification from the threat of contagion. Even recently enacted smoking bans in New York and elsewhere were passed only after the public accepted findings that secondhand smoke poses a serious health threat to others.
But diabetes, though now a fearsome epidemic, is not communicable; nor do the behaviors that lead to the disease (primarily lack of exercise and improper diet) put others at risk of illness. It cannot even be said of diabetics, as is often said of illegal drug users, that their habits foster a life of crime or fund crime syndicates and terrorist networks. So how does it become a matter of public interest that governments monitor the medical records of individual citizens for telltale signs of high blood sugar -- much less that they "target interventions"? Isn't this the ultimate example of the nanny state run amok?
Many Americans no doubt will say so when they first learn of this and other infringements on medical privacy. But a hard truth is emerging in our time that should caution against snap judgments on the issue: Maintaining medical privacy has become more and more expensive, both to individuals and to the public. The emerging question is whether medical privacy is a basic right or something more akin to a privilege for which those who want it should pay, rather than shifting the cost to others.
The primary reason for the increasing cost of medical privacy is the increasing prevalence of chronic diseases such as diabetes. Diseases of this kind, which have become the leading causes of illness and death in advanced societies, typically can neither be prevented nor cured nor even much ameliorated except by changes in diet and lifestyle -- changes that most of us, including myself, are disinclined, perhaps even genetically so, to make.
The medical treatment of chronic diseases typically requires highly coordinated and continuing care. It usually involves an array of specialists engaged in care ranging from surgery to intensive patient education, physical therapy, attempted behavioral modification and, especially in the case of diabetes, constant monitoring.
Moreover, advancing our understanding of how best to cure and manage such diseases requires assembling vast amounts of medical data about populations as a whole. There can be no "evidence-based" medicine without collecting evidence about what works for most people most of the time.
Taken together, all this means that the gathering and sharing of medical information is becoming more and more crucial to the effective practice of medicine, as well as to keeping it affordable for most citizens. This is one big reason why a broad consensus is emerging, ranging from Hillary Clinton to Newt Gingrich, behind the idea that every American should have a lifelong, electronic medical record. The promise is that such records would lead not only to better coordination of care among different providers but to fewer medical errors, more scientific medical practices, and ultimately, greatly reduced costs.
But the trade-off for any increase in the flow of medical information is of course a potentially huge loss of individual privacy. In what instances and circumstances are such trade-offs worth it? This is the new threshold issue in American health care. Medical privacy is not free. Lack of free-flowing information in the health care system drives up the cost of health insurance and contributes to the problem of the uninsured. For the population as a whole, it impedes the safe and effective practice of medicine, retards development of medical protocols based on science, and in all these ways and more reduces productivity and life expectancy. Medical privacy is not simply a question of individual right, even for individuals whose medical problems might at first seem purely their own concern.
The writer, a senior fellow at the New America Foundation, is working on a book about the future of American health care.