Although HIPAA outlines clear rules, courts have often had to step in to interpret its meaning and adapt it to modern challenges. Judges are called upon to act as “scientific gatekeepers,” a role George P. Smith II describes in ‘Judicial Decisionmaking in the Age of Biotechnology’ is necessary for shaping “a new common law of biotechnology, one that begins to build a framework for principled decisionmaking upon which stability and predictability can be assured.” These interpretations define the limits of privacy protections and the responsibilities of those who handle medical information.
Smith cautions that the modern judiciary must remain “forever vigilant to the interlinking relationships or synergistic forces found in law, science, ethics, and medicine.” Because many of HIPAA’s rules were written before mobile devices, cloud computing, and email became common, courts have had to decide how those laws apply today.
They have ruled on whether text messages and emails fall under HIPAA’s scope, how electronic consent should be interpreted, and how third-party vendors or “business associates” must handle patient data. Such decisions reflect what Smith calls a “modified form of judicial activism…shaped by reason, understanding, and contemporary social policy,” allowing courts to fill the legislative void when statutes lag behind technological progress.
Finally, the courts check the power of regulators and protect patient rights. When the Department of Health and Human Services’ Office for Civil Rights (OCR) enforces HIPAA, courts review whether those enforcement actions align with the law’s intent.
The major privacy laws
The privacy framework of healthcare data is found in the Privacy Rule and sets out how ‘covered entities’, healthcare providers, health plans, and healthcare clearinghouses, can use and share PHI. The Privacy Rule limits how this information can be used or disclosed, while also giving individuals rights: the ability to access their medical records, request corrections, and understand how their data is being handled.
Working alongside the Privacy Rule is the HIPAA Security Rule, which requires covered entities and their business associates to establish administrative, physical, and technical safeguards to ensure the confidentiality, integrity, and availability of electronic health data.
HIPAA’s Enforcement Rule spells out the civil and criminal penalties for violations and gives the OCR authority to investigate and audit organizations for compliance. Over time, amendments like the 2013 HIPAA Omnibus Rule have strengthened these protections, expanding coverage to business associates and ensuring that patient information remains protected even after death.
Beyond HIPAA, several other federal laws help protect health-related data. The Genetic Information Nondiscrimination Act (GINA) of 2008 protects individuals from being discriminated against based on their genetic information, a growing concern as genetic testing and precision medicine become more common. GINA prevents health insurers and employers from misusing genetic data, addressing a gap that HIPAA does not directly cover.
State laws add another layer of protection. Many states have their own healthcare privacy laws that go beyond federal standards, covering areas like mental health records, HIV/AIDS status, or prescription monitoring programs. California, for example, enforces the Confidentiality of Medical Information Act (CMIA), which mirrors HIPAA but includes additional patient rights and tighter restrictions on certain types of data.
California’s broader privacy laws, the California Consumer Privacy Act (CCPA) and the California Privacy Rights Act (CPRA), have further expanded consumer rights over their data, including healthcare information. They give individuals more control through rights to access, delete, and opt out of data sales.
How court rulings fill in the gaps
One of the biggest gaps courts often step in to address is HIPAA’s limited power to enforce individual patient rights. The law sets strict rules for how covered entities and their business associates handle protected health information, but it doesn’t give patients the right to sue healthcare providers directly for violations.
As Fenske, Brown, and Kosseff (2024) point out in the study ‘Courting Consensus: How Class Action Lawsuits Shape Data Privacy Rights and Obligations in the US’, “the United States does not have a unified legal or regulatory framework governing data security,” leaving lawsuits as “a primary method by which companies that store user data face consequences for poor security practices.” To bridge that gap, courts have allowed patients to pursue claims under state laws, like negligence, breach of contract, or invasion of privacy, when their medical information is mishandled.
Courts also helped in clarifying what HIPAA means in real-world situations, especially when it comes to patient consent. While the law requires authorization for most disclosures, it allows exceptions for treatment, payment, operations, and certain legal obligations. Courts have stepped in to decide whether these exceptions are applied properly or stretched too far. These rulings push healthcare organizations to be clearer about their consent policies and more transparent with patients.
As technology evolves, so does the interpretation of HIPAA’s Security Rule. Courts have used breach and hacking cases to define what counts as reasonable security measures and how diligent healthcare entities must be. These decisions help turn HIPAA’s technical language into practical expectations, like requiring encryption, regular staff training, and detailed audit logs. In doing so, courts have helped shape a modern standard of care for data protection that evolves alongside cybersecurity threats.
The cases impact data privacy in the healthcare sector
Byrne v. Avery Center for Obstetrics & Gynecology, P.C. (2018)
The Connecticut case establishes a new cause of action for violations of patient healthcare privacy. The Connecticut Supreme Court ruled that unauthorized disclosures of medical information could lead to state law claims. This shows that HIPAA could inform the standard of care in negligence claims.
An article published in the Connecticut Bar Association Magazine, Connecticut provides, “Based on state, federal, and sister state law, the court decided that a patient should have a civil remedy against a health care provider for the unauthorized disclosure of confidential information 'unless the disclosure is otherwise allowed by law.'”The decision set a precedent for future cases regarding healthcare providers’ responsibilities to protect PHI.
Doe v. Tenet Healthcare Corporation (2024)
The federal court upheld privacy claims against a hospital for using tracking technologies that allegedly disclosed patients’ confidential information without consent. The court recognized the fiduciary duty (I.e. a legal responsibility of care and confidentiality) between provider and patient allowing for claims of negligence and a breach of fiduciary duty to proceed.
Smith v. Facebook (2023)
Although not strictly a healthcare case, it involved allegations that Facebook tracked users visiting healthcare websites, collecting PHI without consent. The plaintiffs argued that this tracking violated both federal laws and their data privacy rights under the California Constitution. The case shows the complexities of data privacy in the healthcare context especially considering third-party data collection practices that can compromise patient confidentiality.
Related: Meta sued for collecting patients’ private health data
Change Healthcare, Inc. Data Breach Litigation (2024)
The most recent case in the list, Change Healthcare faced a ransomware attack on multiple systems resulting in multiple lawsuits that were consolidated alleging negligence. There were also allegations of a breach of contract due to compromised PHI. The litigation revealed the legal ramifications faced when they fail to adequately protect PHI from cyber threats.
Related: UHG faces legal storm over Change Healthcare data breach
FAQs
What portions of data privacy in a healthcare setting are not covered by HIPAA?
Data generated by noncovered entitled and deidentified data, stripped of personal identifiers) can be shared freely without HIPAA restrictions once it meets specific criteria outlined by the Privacy Rule.
What are the implications of allowing data to be shared across various platforms?
When health data is shared across multiple platforms, there is an increased risk of unauthorized access or breaches especially if those platforms do not adhere to HIPAA.
What are the challenges associated with using digital technology meant for regular consumers in healthcare?
Consumer health applications like Gmail collect vast amounts of personal health information that may not be subject to the same regulatory standards as HIPAA compliant email platforms like Paubox.
Kirsten Peremore
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