We are proposing that information otherwise protected by these regulations retain that protection for two years after the death of the subject of the information. The only exception that we are proposing is for uses and disclosures for research purposes.
HIPAA includes no temporal limitations on the application of the privacy protections. Although we have the authority to protect individually identifiable health information maintained by a covered entity indefinitely, we are proposing that the requirements of this rule generally apply for only a limited period, as discussed below. In traditional privacy law, privacy interests, in the sense of the right to control use or disclosure of information about oneself, cease at death. However, good arguments exist in favor both of protecting and not protecting information about the deceased. Considering that one of the underlying purposes of health information confidentiality is to encourage a person seeking treatment to be frank in the interest of obtaining care, there is good reason for protecting information even after death. Federal agencies and others sometimes withhold sensitive information, such as health information, to protect the privacy of surviving family members. At the same time, perpetual confidentiality has serious drawbacks. If information is needed for legitimate purposes, the consent of a living person legally authorized to grant such consent must be obtained, and the further from the date of death, the more difficult it may be to identify the person. The administrative burden of perpetual protection may eventually outweigh the privacy interests served.
While various State laws have been passed specifically addressing privacy of genetic information, there is currently no federal legislation that deals with these issues. We considered extending the two-year period for genetic and hereditary information, but were unable to construct criteria for protecting the possible privacy interests of living children without creating extensive burden for information holders and hampering health research. We invite comments on whether further action is needed in this area and what types of practical provisions may be appropriate to protect genetic and hereditary health information.