Cassie Jankowski Jones is a nursing major minoring in disaster preparedness and emergency management at Arkansas State University. Cassie is from Mountain Home, Arkansas, and is active on her campus and in the state legislature, working with organizations such as the Arkansas Hunger Alliance. She is active in multiple honors and scholarly organizations, including Phi Theta Kappa and Phi Kappa Phi, and she is a graduate of the Fran Coulter Honors Society. She plans to continue her education and achieve a doctorate in psychiatric nursing.
Alice is a 16-year-old girl who goes to a doctor’s appointment alone. Alice reports depression and occasional self-harm by cutting her arms but denies suicidal ideation. Alice pleads with the doctor not to tell her parents. She states that her parents would be upset and claim her problems are “all in her head.” If you were her parent, would you be upset she did not want you to know? If you were the patient, would you not want your wishes respected? If you were the provider, would you notify her family?
These scenarios are not uncommon in medicine, nor is the underlying question: When should adolescents be able to keep their medical information private from their family?
Case studies with adolescents like these are often considered a gray area, especially in comparison to treatment for adults or young children. To discuss this issue, several important definitions and regulations must be understood. First, privacy is defined by the American Psychological Association as “the right to control others’ access to one’s personal world.” Confidentiality is a principle of professional ethics requiring providers to keep sensitive data secure. HIPAA, the Health Insurance Portability and Accountability Act, is the federal law governing the handling of medical information in the United States. HIPAA leaves areas open to state interpretation, which partially accounts for the wide variability in state privacy laws concerning adolescents and the confusion about what can be kept private. Some areas are clear, such as the rights of emancipated minors to keep their records private from parents, but who gets to determine when an adolescent still under guardianship gets to keep information private?
Some argue that parents should have full access to an adolescent’s medical records, despite what their teenager may or may not want them to see. After all, parents do have legal rights in their children’s lives and must give consent to treatment for minor children. On the other hand, it could be the case that the teen is in a dangerous situation at home, and exposing information could lead to further harm and the withdrawal of necessary treatment.
The introduction of electronic health records, or EHRs, have further complicated this issue. With many modern EHRs, parents must set up the account, and teens often cannot limit a parent’s access. As more hospitals are transitioning to user-friendly patient portals, the number of parents who have easy access to their teenager’s records increases, whether they should have access in the first place. Technological advances continue to leap forward, while basic ethical questions remain.
What is the best answer to the earlier example? Perhaps the best answer is to obtain more information from Alice about her situation. The law provides space for providers to act in what they see as the “best interest” for the patient, whether that is withholding information or not. In this case, more information is needed to determine what the proper action is. Whether a parent can request and access this information also changes on a case-to-case basis. This variability is not a reason to dissolve state interpretation, but it shows the necessity to implement widespread ethical training on handling adolescent cases. Adolescents are a greatly underserved population, and to deal with the question of privacy requires not just another debate, but better education and training with these difficult questions. The weight of their privacy and mental health rests on it.