For the Record

Minors' Rights at Center Stage in Medical Records Privacy Debate

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First published online:

President Bill Clinton joined Department of Health and Human Services (DHHS) Secretary Donna Shalala October 29 in proposing federal regulations that would establish the first national standards to protect patients' personal medical records in some cases. The standards would apply to medical records created by health care providers, hospitals, health plans and health care clearinghouses, provided that those records are either transmitted or maintained electronically. Paper printouts from these records also would be protected.

The regulations are required under the terms of the 1996 Health Insurance Portability and Accountability Act. That law committed Congress to enacting comprehensive legislation to prevent medical information, maintained electronically or otherwise, from being disseminated without patients' consent by August 21, 1999. The law further provided that if Congress failed to do so by that date, DHHS was to begin drafting more limited regulations for completion by February 2000. Lawmakers missed this deadline and, in fact, have been stymied by the medical privacy issue for several years. A number of competing proposals are on the table, but action has been postponed, in large part because of controversy on whether a uniform national standard governing parents' access to the medical records of their minor children should preempt state policy on this matter.

In the absence of a federal policy, state laws concerning the right of minors to consent on their own to medical care also determine whether their records are confidential. Currently, 23 states and the District of Columbia explicitly guarantee minors the authority to consent to contraceptive services, and 49 states and the District of Columbia allow minors to consent to the diagnosis and treatment of sexually transmitted diseases. No state explicitly mandates parental involvement for minors to obtain these services. Regarding abortion, however, the situation is quite different; 41 states have enacted laws requiring either parental consent or notification before a minor may obtain an abortion, although the laws are not in effect in all of those jurisdictions.