"Police" Powers and Public Health Paternalism: HIV and Diabetes Surveillance

The New York City Health Department is implementing aggressive and highly controversial public health interventions that are catching the attention of municipalities in America and beyond. The most well known is the recent ban on trans fats in foods. Less publicized, but equally controversial, are the city's HIV and diabetes surveillance initiatives.

The Initiatives

HIV testing and case reporting have generated impassioned resistance.¹ Late last year, the Centers for Disease Control and Prevention issued a sweeping revision of its guidelines, recommending testing for everyone aged thirteen to sixty-four as part of routine medical care.² The CDC proposes "opt-out" testing: all patients would be notified that testing will be performed unless an individual specifically declines. Separate written informed consent and pretest counseling would no longer be required.

New York City proposes to conform with CDC guidelines by allowing oral, not written, consent; simplifying the extensive pretest counseling (eliminating the duty to inform patients about discrimination and safer behavior); and authorizing health officials to notify health care providers of a positive test result in order to link the person to care. The city was forced to drop a controversial proposal that would have allowed health officials to gather and share information that would identify which patients had stopped taking their medications or were not responding to treatment. The information would have been shared with patients and health care professionals.³

Here we have a classic illustration of strategies that can produce important public health benefits but engender fear and distrust within the community. Opt-out testing would increase the number of recognized HIV infections, enabling greater access to behavioral counseling and early treatment. Nevertheless, the proposed legislation has been fiercely attacked for undermining informed consent, invading patient privacy, and interfering with the physician-patient relationship.⁴ There is little doubt that some patients will unknowingly receive HIV tests, whether due to vulnerability, illiteracy, or cultural barriers. But is the relatively small risk of interfering with personal autonomy sufficient to thwart a measure designed to significantly improve prevention and treatment for HIV? No easy resolution exists: policies that meet public health objectives often raise community concerns, and policies that meet civil liberties objectives often fail to fulfill public health goals.

If anything, diabetes surveillance is more contentious than HIV surveillance. After all, HIV is an infectious disease, so surveillance is justified by the imperative of preventing risk to others. Diabetes, a chronic disease, offers no such justification. It relies on the purely paternalistic assumption that patients and their physicians need state supervision in the recognition and management of their disease.

The justification for diabetes surveillance begins with the crushing burden of the disease. It is the sixth leading cause of death in the United States, affecting indigent and minority populations disproportionately. Moreover, public health agencies do not systematically monitor diabetes within the population, even though the majority of patients do not adequately manage the disease—indeed, do not even know their glycosylated hemoglobin values—because they have not been tested, have not been informed about test results, or do not recall them.

The New York City Board of Health implemented a novel response to the diabetes epidemic in 2006. The board called for three interrelated activities: (1) mandatory electronic reporting of glycosylated hemoglobin by laboratories, but not by physicians; (2) best practice recommendations for health care providers and rosters of patients in their practice who are in poor glycemic control; and (3) mailing information and resources on diabetes management to patients with high glycosylated hemoglobin values.⁵ The initiative will create a registry of glycosylated hemoglobin test results—an estimated one to two million results annually—that is linked to patients and their physicians, with identifiable information such as name, birth date, and address.⁶ The purposes of the regulatory requirements are, first, to improve diabetes surveillance and epidemiology by describing and characterizing the burden of disease in the population, and second, to provide individual and aggregate feedback and support to providers and patients.

The New York City diabetes initiative has been engulfed in criticism from many quarters since its inception. Clinical laboratories worry...