Joseph Conn reports:
The American Medical Informatics Association is asking Congress to amend a central federal healthcare privacy rule, in order to give medical researchers access to patient records without their consent.
A see-saw battle has been waged at the federal policy level for more than a decade over patient consent regarding medical records, with patient privacy advocates arguing that control over information about one’s self is the definition of privacy.
So, not surprisingly, a leading privacy advocate reacted negatively to the AMIA request.
“It’s shocking that they don’t have enough data yet, they’re going after more?” said Dr. Deborah Peel, a psychiatrist who heads the Patient Privacy Rights Foundation in Austin, Texas. “We completely support the opinion that every research use should be disclosed to the patient.”
Read more on Modern Healthcare.
It’s not just disclosure, of course, that’s at issue. It’s also the issue of consent or at the very least, the right to opt out of use of PHI.
This blogger believes that Congress should not amend HIPAA to permit research use of PHI without patient consent.