Harley Geiger writes about an issue I’ve discussed on this blog in the past: the privacy of the deceased’s medical records:
The Department of Health and Human Services (HHS) wants to remove health information privacy protections from people who have been dead for 50 years. HHS issued a proposed rule to update health privacy regulations, and most of their modifications were quite positive from a privacy perspective. However, this idea is as weird and terrible as the logo for the scrapped Total Information Awareness Office.
Currently, the law requires that the health information of the dead be protected in the same manner as that of the living. Generally speaking, health care organizations can use patient data for treatment, payment and operations purposes without the consent of the patient, but must get the consent of the patient for most other purposes, like marketing or research. When the patient is deceased, health care companies must seek consent from the dead person’s personal representative, like the executor of the estate.
In the proposed rule, HHS states that the plan stems from the difficulty of locating personal representatives to obtain authorizations to use the health data of the deceased. Specifically, HHS refers to the frustrations of historians, biographers and archivists. (At last, the true might of the archivists’ lobby is revealed to us all.) HHS reasons that waiting until 50 years after death would protect the privacy of the deceased and their relatives.
CDT disagrees. We believe this proposed modification would be significantly more detrimental to patient privacy than it may seem. There are just too many unknowns to make this modification for the sake of posterity.
Read more on CDT.
While I have always appreciated the interest of historians and biographers, and would be fascinated to see the medical records of Edgar Allan Poe’s last hospitalization, I am more concerned about the impact of disclosure on descendants who may find that their forefathers had genetically linked mental health disorders. Could we argue that they are better off knowing than not knowing? Sure, but that would be presumptuous on our part. If new regulations can make it acceptable for records to be released with without a personal representative’s approval after 50 years, what about after 10 years? 5? 2? If we can trace someone’s genes back thousands of years to a particular tribe in Israel, is 50 years really long enough to protect those alive today from potentially embarrassing or upsetting revelations? I don’t think so. So as sad as I would be to lose interesting historical data and insights, I think we need to preserve the status quo of requiring the consent of a personal representative to release medical records of the deceased.
[corrected “with” to “without”]
Comments well said. If there is a need to know medical history, I am quite sure it would be passed from one generation to another. Frankly, many people may have been misdiagnosed due to new technology and the ability to isolate a particular illness. Let the dead have their dignity.