106th Congress: Health Records Privacy

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Legislative efforts to enact Federal legislation to set standards for protecting confidentiality of health care records stalled as an August 1999 deadline imposed by the Health Insurance Portability and Accountability Act (HIPAA) passed.. HIPAA, which was enacted in 1996, provided for "administrative simplification" for record keeping and also required that Federal privacy standards be developed. Since Congress did not act to set privacy standards by August 21, 1999, the Department of Health and Human Services (HHS) has begun the process of implementing regulations. ANA is submitting comments on the proposed regulations, which are due on February 17, 2000. Once the regulations are finalized, there would be a two-year delay in actual implementation.

ANA is actively participating in the Consumer Coalition for Health Privacy, which has agreed to a set of principles that should govern Federal legislation. The coalition is committed to the development and enactment of public policies and private standards that guarantee the confidentiality of personal health information and promote both access to high quality care and the continued viability of medical research. The coalition's principles address:

  • the right to privacy established by law;
  • limitations on identifiable information;
  • an individual's right to access his or her own health information and to supplement such information;
  • the right of individuals to be notified about how their records are used and when their individually identifiable health information is disclosed to third parties;
  • a prohibition on use or disclosure of individually identifiable health informaton absent informed consent;
  • protections which do not impede important public health efforts or clinical, medical and quality of care research;
  • a requirement for development of security safeguards for the use, disclosure and storage of personal health information;
  • strong and enforceable remedies for violations of privacy protections and protections for health care workers from retaliation if they disclose abuses; and
  • a national law which provides a floor for the protection of individual privacy rights, not a ceiling.

Because the scope of HIPPA limits the ability of HHS to implement comprehensive standards, efforts to enact legislation on this issue will continue. Several House and Senate bills have been introduced to address this issue. The common framework for all of the major bills includes: a right of consumers to see what is in their own record; limits on disclosure through some type of authorization; a requirement for notice about the circumstances of disclosure; provisions dealing with access for research purposes; law enforcement access; remedies and enforcement that might include a private right of action and civil and/or criminal penalties for egregious violations; and preemption of state laws.

Contentious issues include the extent of the preemption of state laws, the nature of the authorization and informed consent, possible costs to the private sector, restrictions on adolescent confidentiality, insulating employee health records from employers who provide health benefits, and problems unique to mental health patients, such as involuntary commitments.

On the issue of preemption of state privacy laws, Sen. James Jeffords (R-VT), Chairman of the Senate Health, Education, Labor, and Pensions Committee, has proposed "grand fathering" existing state laws that are stronger than those set in the Federal legislation, but would not allow states to pass more restrictive laws after the date of enactment of the proposed Federal law. Consumer advocates, including ANA, are concerned that such an inflexible preemption would not allow states to act in a public health emergency to meet privacy needs that could arise.


ANA supports enactment of federal legislation to set standards for protecting confidentiality of health care records. ANA supports a strong Federal floor for protecting privacy of health records and not a ceiling. Federal law should not preempt stronger state standards.