Violating Parents’ Right to Child’s Medical Records Will Not Stand

Sean and Katherine Johnson’s daughters are bright, active, and joyful girls. While at a routine wellness visit for their eldest daughter, Jane, who was then 11 years old, their pediatrician noticed some worrying symptoms that were later diagnosed as mosaic Turner syndrome.

For Jane, the condition caused cardiac abnormalities requiring lifelong care. Committed to providing their daughter with the best treatment possible, Katherine and Sean sought care at Fairview Health Services. But they soon encountered a bewildering obstacle when Katherine tried to review Jane’s medical records before an appointment. To her surprise, all family members’ access to Jane’s medical MyChart account had been revoked.

When Katherine inquired, she was handed a two-page “MyChart Proxy Access Request Form” and informed that Jane, then 12, would need to meet with hospital staff alone for an interview before she could decide whether to grant her parents permission to view her records. This blanket policy violates Katherine and Sean’s fundamental constitutional right as parents to direct the care and upbringing of their children as well as a federal statute, the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

On this core principle, HIPAA conforms with parents’ constitutional right to make medical decisions for their children and guarantees parents everywhere access to their minor children’s health information, with few exceptions, such as procedures related to pregnancy, drug abuse, domestic violence, or when releasing information poses a risk to the child’s safety.

Although Fairview cites Minnesota law as justification for their policy, none of the legal exceptions in the state law applied to Jane’s cardiac treatment or Turner syndrome diagnosis. And even if state law required such an intrusion into Sean and Katherine’s access, it would be superseded by clear federal statutory and constitutional law.

In two early landmark rulings, the Supreme Court affirmed the fundamental right of parents to make decisions for their children except in exceptional circumstances, striking down state laws in the 1920s that forbade education in Catholic schools and the teaching of German. In the decades since, the Supreme Court has repeatedly affirmed parents’ rights to choose how they care for and raise their children, from Amish parents’ rights to keep their children in their exclusive community, to the rights of a widowed mother to limit her in-laws’ visitation rights.

Fairview’s denial of access to Jane’s medical records blatantly violates these basic parental rights, creating unnecessary barriers for parents trying to manage their child’s healthcare and wellbeing.

Sean and Katherine’s fight for access to their minor daughter’s medical records is a reminder of the importance of protecting individual rights—both for parents and children. On the Johnsons’ behalf, CIR initiated a formal complaint with the HHS Office of Civil Rights seeking to reverse Fairview’s illegal practices. If that doesn’t provide prompt relief, CIR will take other action. This injustice will not stand.