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Understanding the roots of modern health privacy

Written by Gugu Ntsele | Mar 20, 2025 12:50:09 AM

Before the Health Insurance Portability and Accountability Act (HIPAA) became law in 1996, medical ethics and professional associations had established principles and guidelines to protect patient privacy and confidentiality. These ethical frameworks laid the groundwork for what would eventually become federal legislation. 

 

The ancient roots of medical confidentiality

The concept of medical confidentiality dates back to antiquity. The Hippocratic Oath, formulated in the 4th century BCE, contains the foundational principle: "Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private."

This principle of discretion and confidentiality remained mostly unchanged for centuries, serving as the ethical cornerstone of medical practice long before formal regulatory frameworks emerged. However, the transition from individual ethical commitment to standardized professional guidelines would take centuries to develop.

Despite remaining true to its foundational roots, confidentiality has changed significantly in recent years. According to a study titled Hippocratic oath: Losing relevance in today's world, “When the oath was formulated, there existed only a tripartite relationship in medicine: between the patient, physician, and illness. This harmony was disrupted by the advent of health insurance, malpractice issues, technology, and pharmaceutical companies.”

 

Early American medical ethics and privacy considerations

In the United States, the first formalized code of medical ethics emerged in 1847 when the American Medical Association (AMA) adopted its Code of Medical Ethics. This document, influenced by British physician Thomas Percival's medical ethics work from 1803, explicitly addressed confidentiality:

"The obligation of secrecy extends beyond the period of professional services; none of the privacies of personal and domestic life, no infirmity of disposition or flaw of character observed during professional attendance, should ever be divulged by the physician except when imperatively required by the laws of the state."

The AMA's early code established important principles that would later influence HIPAA:

  1. The concept that privacy protections extend beyond the immediate doctor-patient interaction,
  2. Recognition that medical information is inherently sensitive and deserving of special protection,
  3. Acknowledgment that legal requirements could sometimes override confidentiality,

 

The mid-20th century: Expansion of professional guidelines

The post-World War II era brought changes to healthcare and privacy considerations. The Nuremberg Code of 1947, though focused on medical research ethics, established the importance of informed consent—a concept that would later become central to health privacy regulations.

By the 1960s and 1970s, multiple medical specialty organizations began developing their own ethical codes that included privacy provisions:

The American Psychiatric Association's guidelines from 1973 were influential, as they recognized the sensitivity of mental health information and established stronger protections for psychiatric records than existed for general medical information—a distinction that would eventually be reflected in HIPAA's psychotherapy notes provisions.

The 2013 edition of the American Psychiatric Association's guidelines stated, “Psychiatric records, including even the identification of a person as a patient, must be protected with extreme care. Confidentiality is essential to psychiatric treatment... Growing concern regarding the civil rights of patients and the possible adverse effects of computerization, duplication equipment, and data banks makes the dissemination of confidential information an increasing hazard. Because of the sensitive and private nature of the information with which the psychiatrist deals, he or she must be circumspect in the information that he or she chooses to disclose to others about a patient. The welfare of the patient must be a continuing consideration.”

 

Hospital associations and institutional privacy practices

The American Hospital Association (AHA) approached privacy from an institutional perspective. In 1973, the AHA adopted its Patient's Bill of Rights, which included explicit privacy protections:

"The patient has the right to every consideration of privacy concerning his own medical care program. Case discussion, consultation, examination, and treatment are confidential and should be conducted discreetly."

An NIH article titled Patient Rights and Ethics outlined how “The American Hospital Association (AHA) created the first patient bill of rights specifying aspects of patient relationships with HCPs and HCOs, although it had little enforceability.”

The AHA's framework established important institutional responsibilities around privacy protection that would later be reflected in HIPAA's focus on covered entities rather than just individual providers. 

 

The information age challenges traditional privacy protections

Paper records had physical limitations that provided some privacy protection—they could only be accessed by someone physically present, and copying large volumes of data was challenging.

As healthcare organizations began transitioning to electronic systems, these natural barriers disappeared. The Department of Health, Education, and Welfare (now Department of Health and Human Services) recognized these challenges in its 1973 report, "Records, Computers, and the Rights of Citizens," which proposed a Code of Fair Information Practices. The Code rests on five basic principles - principles that would become central to HIPAA decades later:

  1. There must be no personal data record-keeping systems existing in secret. 
  2. There must be a way for an individual to find out what information about them is in a record and how it is used.
  3. There must be a way for an individual to prevent information about them obtained for one reason to be used for others. 
  4. There must be a way for an individual to correct or amend a record of identifiable information about them.
  5. Any organization creating, maintaining, using, or disseminating records of identifiable personal data must assure the reliability of the data for their intended use and must take precautions to prevent misuse of the data.

 

Nursing ethics and interdisciplinary approaches

The American Nurses Association (ANA) made contributions to privacy ethics through its Code for Nurses, first adopted in 1950 and regularly updated since. The nursing perspective brought important aspects to privacy discussions, including:

  1. Recognition of the team-based nature of modern healthcare and the need for information sharing among care team members
  2. Consideration of privacy in non-hospital settings, including home care
  3. Acknowledgment of the practical challenges in maintaining confidentiality in busy clinical environments

 

Pre-HIPAA legislative attempts and sectoral privacy laws

Different sector-specific laws emerged, each addressing different aspects of health information:

  • The Privacy Act of 1974 established a code of fair information practices that governs the collection, maintenance, use, and dissemination of information about individuals that is maintained in systems of records by federal agencies. 
  • The Drug Abuse Prevention, Treatment, and Rehabilitation Act of 1972 (and its 1992 amendments) provided specific protections for substance abuse treatment records.
  • State medical privacy laws differ, creating a regulatory setting for multi-state healthcare organizations.

 

Professional ethics in the direct lead-up to HIPAA

The AMA's updated guidelines on confidentiality 

The AMA's updated guidelines addressed computerized records and included detailed provisions on:

  • The need for secure authentication mechanisms for electronic systems
  • Restrictions on transmission of identifiable patient data
  • Requirements for audit trails to monitor data access
  • Patient rights to review who had accessed their information.

 

The Joint Commission's privacy standards

The Joint Commission (formerly JCAHO) included privacy requirements into its accreditation standards for healthcare organizations. These standards required hospitals to:

  • Develop and implement information confidentiality policies
  • Train staff on privacy protection procedures
  • Establish sanctions for privacy violations
  • Create processes for patients to access their own information

 

HIPAA's development

When HIPAA was being developed, its architects took inspiration from decades of professional ethics development. Elements of professional ethics that directly influenced HIPAA included:

  1. Minimum necessary standard: The concept that only the minimum information needed should be disclosed originated in nursing ethics guidelines from the 1980s.
  2. Delineated exceptions to confidentiality: HIPAA's structured exceptions for treatment, payment, and healthcare operations mirror frameworks developed by the AMA and AHA that balanced practical needs against privacy concerns.
  3. Special protections for sensitive information: HIPAA's additional safeguards for psychotherapy notes reflect the American Psychiatric Association's longstanding position on the sensitivity of mental health information.
  4. Institutional responsibility: The focus on organizational compliance rather than just individual practitioners' ethics stems from hospital association frameworks.
  5. Patient access rights: HIPAA's provisions granting patients access to their own records built on patient rights principles established in the AHA's Patient's Bill of Rights.

 

How HIPAA departed from professional ethics traditions

  1. Legalization of ethics: HIPAA transformed what had been ethical guidelines into legally enforceable requirements with specific penalties. 
  2. Standardization across sectors: Unlike professional ethics that differed by specialty, HIPAA created uniform standards applicable across medical specialties, institutional settings, and geographic boundaries.
  3. Focus on administrative safeguards: HIPAA placed emphasis on administrative and technical safeguards that went beyond traditional confidentiality considerations.
  4. Expansive definition of protected information: Professional ethics previously focused on information disclosed directly in the provider-patient relationship, while HIPAA protected all individually identifiable health information regardless of source or context.
  5. Balancing act between privacy and information flow: HIPAA acknowledged the need to balance privacy protection with the flow of information for healthcare delivery and public health.

 

FAQs

What is the connection between ancient medical practices and modern health privacy?

Ancient principles like those in the Hippocratic Oath laid the foundation for modern health privacy, emphasizing confidentiality in patient care.

 

What is the balance between privacy and information flow in HIPAA?

HIPAA strives to protect privacy while allowing necessary information flow for healthcare delivery and public health.

 

What challenges arose with the move from paper records to electronic health systems?

The transition to electronic health records eliminated natural privacy barriers, raising concerns about data access, misuse, and the need for new security measures.

 

What does HIPAA's focus on "covered entities" mean for healthcare privacy?

HIPAA's focus on "covered entities" shifted responsibility for privacy protections from individual healthcare providers to the organizations and institutions managing patient data.

 

What were the privacy concerns raised by the 1973 report on "Records, Computers, and the Rights of Citizens"?

The 1973 report highlighted the risks of electronic records and proposed principles for protecting personal data, which later influenced HIPAA's privacy regulations.