November 30, 2001

AAMC Calls on HHS To Reopen Privacy Rule's Research Provisions

The AAMC joined nearly 200 research universities, medical schools, teaching and community hospitals, medical specialty and scientific societies, and other associations in a Nov. 20 letter to HHS Secretary Tommy Thompson requesting that the department re-open rulemaking for the "Standards for Privacy of Individually Identifiable Health Information." Citing "the growing consensus within our community that the rule must be amended to avoid the harm that will result when covered entities and research companies in private industry begin their implementation efforts, " the letter states, "[T]he rule's restrictions on the use and disclosure of protected health information for research purposes, and limits on the retention of research data, will seriously impair our ability to conduct clinical trials, clinico-pathological studies of the natural history and therapeutic responsiveness of disease, epidemiologic and health outcome studies, and genetic research."

Information: Jennifer Kulynych, Ph.D., J.D., AAMC Division of Biomedical and Health Sciences Research, 202-828-0484.