How the HIPAA Privacy Rule Helped Teens (or Didn’t)

A federal rule took effect in 2002 with the goal of strengthening privacy protections for individuals’ health information and medical records. Based on portions of the Health Insurance Portability and Accountability Act of 1996 (or HIPAA), the rule might have been a boon to teens, for whom assurances of confidentiality often make the difference in decisions about whether to obtain or to forgo certain types of care—like sexual and reproductive health services. But the devil was in the details. In a 2004 comment piece, Abigail English and Carol A. Ford examined the rule’s provisions and described the compromise it struck “between competing viewpoints about the importance of parental access to minors’ health information and the availability of confidential adolescent health care services.” After considering the rule’s numerous what-ifs and qualifications, the challenges it posed for practitioners, and how it operated vis-à-vis other relevant laws (both state and federal), they concluded that it “had the potential to make sweeping changes in adolescents' ability to access services on a confidential basis, but in the end left the status quo essentially intact.”

And where do things stand now? The picture is mixed. While all 50 states and the District of Columbia allow minors to consent to STD services without involving their parents, only 32 and DC permit them to consent to prenatal care, and 26 and DC grant them the right to consent to contraceptive services; only two states and DC allow minors to consent to abortion. Furthermore, the legal right to consent does not preclude the possibility that information will get out, mainly because the paperwork generated for care covered by private insurance goes to the policyholder—typically a minor’s parent. The HIPAA rule, English and Ford wrote, left the door open to change. That door may still be open.

Cover illustrations of Margaret Sanger © Matthew and Eve Levine