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Controversies in Internal Medicine |

Mandated Diabetes Registries Will Not Benefit Persons With Diabetes

Paula M. Trief, PhD; Richard A. Ellison, JD
Arch Intern Med. 2008;168(8):799-802. doi:10.1001/archinte.168.8.799.
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This past year, the New York City (NYC) Department of Health and Mental Hygiene (DOHMH) has embarked on a radical new approach to improving the care of patients with diabetes. Following the lead of a similar program in Vermont,1they have established a mandatory registry of diabetic patients and their hemoglobin A1c(HbA1c) values. Hemoglobin A1cis a reliable measure of blood glucose control over the preceding 2 to 3 months.2Good glycemic control (ie, HbA1clevel <7.0%) is the goal patients and physicians work toward, since it has been convincingly demonstrated that good glycemic control can forestall and prevent diabetes-related complications.3,4Diabetes registries have been used for many years to track and research the disease. However, this registry is different from those commonly used. In the NYC and Vermont registries, information is gathered about the patient without their explicit informed consent, using a passive opt-out procedure. We believe that this approach will be ineffective, will undermine the physician-patient relationship and the expectation of medical privacy, is ethically compromised, and could be dangerous; thus, we take the position against the establishment of such a registry.

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