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Protecting Adolescents’ Privacy – A Complicated and Tangled Mess

May 25, 2022

Lately, I think that every pediatrician in the US has been grappling with how to best protect adolescent privacy within the electronic health record. The 21th Century Cures Act, which recently went into effect, is intended to provide transparency and access to one’s own health records. However, it is complicated for adolescent health records. In many states, adolescents can consent to certain aspects of health care without the consent or knowledge of their parents or guardians. So who can have access to an adolescent’s health records? At what point does that right to access transfer from the parent to the adolescent? If a 12-year-old patient says that their parent can have proxy access to their medical records, how do we assure that their privacy is maintained once they get older? Do we need to discuss medical record access at each visit? What about adolescents with pre-existing medical conditions or cognitive delay?

It’s a mess. At our institution, a committee, comprised of lawyers, IT specialists, primary care clinicians, and subspecialists, has been grappling with these issues. And I’m sure that our institution is not alone.

It is also made more complicated by the fact that every state has different laws about adolescent consent. This week, Pediatrics is early releasing an article, entitled “State-by-State Variability in Adolescent Privacy Laws,” by Dr. Marianne Sharko at Weill Cornell Medicine and her colleagues at Vanderbilt University, Indiana University, and the American Academy of Pediatrics (AAP) (10.1542/peds.2021-053458).

You will be somewhat dumbstruck when you read this article. The authors provide a database of all of the state laws pertaining to adolescent consent and privacy. While I knew that there was state-to-state variability, I was stunned to read this sentence, “No two states had the same consent regulations for all the services.”

This state-to-state variability could have implications when a patient moves from one state to another.

It could also have implications for our patients who spend time in different states (for example, if their parents are divorced, or they spend the summers with a grandparent or other relative, or even if they attend summer camp in another state).

The authors provide an example that illustrates how different state laws can create more than a logistical nightmare; different state laws can even create health and safety issues for an adolescent if, for example, they were receiving sexual and reproductive health services with their privacy protected in one state and then needed these services in another state where their privacy was no longer protected.

While we don’t need to memorize all of the differences, it is important that we realize that there are differences. Many of the state laws are inconsistent with expert guidance from professional organizations such as the AAP and the Society for Adolescent Health and Medicine. Unfortunately, we have to comply with our state laws. However, we can also work with professional organizations within our states to advocate for changes in these laws, and the authors urge us to do so.

Read the corresponding commentary here: 10.1542/peds.2022-056414

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