Parents Sue Hospital to Enforce Federal Right to Daughter’s Electronic Medical Records

Johnson v. Fairview Health Services

Shaun and Katherine Johnson are the parents of a young daughter who at age 11 was diagnosed with mosaic Turner syndrome—a rare genetic condition requiring lifelong heart monitoring. They need prompt, real-time access to their child’s electronic medical records to manage her care. But Fairview Health Services has a blanket policy of cutting off all parental access to children’s MyChart medical records the moment a child turns 12—unless hospital staff conduct a private interview with the child and both agree to restore access. That policy violates federal law. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) guarantees parents the right to access their minor child’s medical records in the form and format requested, except in narrow circumstances that do not apply to this case. It also violates the Johnsons’ constitutional right to direct the care and upbringing of their children.

Responding to previous administrative complaints filed by CIR and likely others, the U.S. Health and Human Services Office for Civil Rights sent two letters detailing parents’ rights to access their children’s medical records “in the form and format” that is requested. One letter was sent directly to Fairview about the Johnsons’ complaint. A second “Dear Colleague” letter was sent nationwide to the entire medical community, with examples that mirror the Johnsons’ situation. But Fairview continues to deny the Johnsons access to their child’s MyChart electronic medical records. Now, we’re taking the hospital to federal court to ensure that the most important people on this child’s care team—her parents—have the timely information they need to engage effectively.

Why This Case Matters:

Fairview is not the only hospital doing this—and the Johnsons are not the only parents denied access to their kids’ medical records. Hospital systems across the country are using “proxy access” rules to cut parents off from their children’s electronic medical records, as documented in this research report by Do No Harm. And HHS’s nationwide “Dear Colleague” letter on December 3, 2025, would not have been issued if the problem it addressed was not widespread. This policy is both unconstitutional and a clear violation of federal law.

In addition to violating HIPAA regulations, Fairview’s conduct runs afoul of a long line of constitutional rulings going back a century. Those cases recognized that parents’ fundamental choices about raising their children cannot be regulated by the state without exceptional justification. As the Supreme Court forcefully expressed in one of its earliest parental rights decisions, Pierce v. Society of Sisters, “The child is not the mere creature of the state; those who nurture him and direct his destiny have the right, coupled with the high duty, to recognize and prepare him for additional obligations.”  

The Johnsons’ daughter is not a creature of the state. She is the minor child of Shaun and Katherine, whose fundamental parental rights require access to their child’s MyChart electronic medical records without the hospital’s interference.  

Fairview Health Services’ refusal to abide by the federal HIPAA standards is thus doubly wrong. It violates clear federal law and regulations—and it interferes with parents’ fundamental constitutional right to raise, educate, and care for their children. Yet the U.S. Constitution and federal laws do not enforce themselves—as shown by Fairview Health Services’ continued refusal to abide by them.

This lawsuit is also part of CIR’s larger federalism project to keep both the federal government and the states in their proper lanes to better protect individual rights—in this case, the parental right to supervise and participate in a minor child’s medical care.

Background:

Shaun and Katherine Johnson were as excited about their daughter’s twelfth birthday as she was. Shortly before her birthday, however, they learned that their child has a rare genetic condition, mosaic Turner syndrome, requiring lifelong medical attention. As the family adapted to these challenges, Shaun and Katherine couldn’t have guessed their medical providers would illegally shut them out of viewing their child’s electronic medical records in the hospital’s MyChart system when she turned 12.  

Fairview claims that a Minnesota state law requires it to deny parental access to online medical records without a private interview with their minor children to secure consent. But in fact, that procedure is only required in limited situations—none of which are involved in this case. And federal HIPAA law protects parental access to a minor child’s medical information. It would also override any contrary state law—if any existed—regardless of what a state or a hospital may prefer.

CIR represents Shaun and Katherine as they seek to reverse this blatant violation of their rights under federal law and their constitutional rights as parents.  

When Katherine asked why she could no longer view her daughter’s MyChart records, a Fairview nurse handed her a two-page proxy access request form and said that her daughter would now need to meet with hospital staff—alone—to give consent for her parents to view her online medical records.

When the Johnsons objected to this intrusive, unsupervised interview with their young daughter, Fairview offered a wholly inadequate alternative: The Johnsons could request paper, PDF, or other versions of her records, which would be sent within 30 days.

For parents managing a child’s serious illness, including regular heart scans and dynamic electronic imaging, a 30-day wait for seemingly incomplete, piecemeal records is no substitute for real-time access to a comprehensive medical file that the hospital could easily provide.

HIPAA sets federal standards for protecting sensitive patient health information and mandates industry-wide standards for electronic health information like MyChart. 

Under HIPAA’s Privacy Rule, parents have rights to access their minor child’s health information in the form requested, except for narrowly defined rules pertaining to certain procedures involving pregnancy, sexually transmitted disease, or when a provider believes the release of information would pose a risk to the health and safety of the child.  

Fairview Health Services cites a Minnesota state law that further defines exceptions to HIPAA’s Privacy Rule, including exemptions involving pregnancy, drug abuse, domestic violence, and neglect. None of these exceptions in state law are relevant to the management and treatment of this diagnosis or to  the child’s individual case.

Fairview Health Services has taken no action to provide the Johnsons access, even after the U.S. Health and Human Services Office for Civil Rights sent two letters that confirm the Johnsons’ right to such access in the form that they request it.

CIR’s first administrative complaint, filed with HHS on July 30, 2025, resulted in an HHS letter to Fairview that explained the requirements of HIPAA’s Privacy Rule and asked Fairview to review the Johnsons’ request and provide the access required by law. After nearly six weeks without any response from Fairview, CIR filed a second complaint on September 7, 2025, based on the suggestion in the HHS letter that the Johnsons should renew their administrative complaint if they were not satisfied with Fairview’s response.

Although the Johnsons’ second complaint is still pending at HHS, in early December, HHS’s Civil Rights Office issued a nationwide “Dear Colleague” letter to the entire medical community containing examples that mirror the Johnsons’ story. The public letter states that, absent special circumstances (not present in this case), a healthcare provider “may not place additional limitations on a parent’s access to the child’s medical records.”

Sadly, Fairview still has not conceded error or restored the Johnsons’ right to view their minor child’s MyChart electronic medical records, but its position is unsustainable. HHS is instructing hospitals nationwide that, with few exceptions, federal law guarantees parents’ right to access their children’s records in the form requested and overrides any inconsistent state law.