Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #119791

Ronald Bayer, PhD, Sociomedical Sciences, Columbia University, 722 West 168th Street, New YOrk, NY 10032, 212-305-1957, rb8@columbia.edu

An Illinois appellate court has addressed the conflict between the obligation to inform the public through de-identified data releases and privacy. The court acceded to a newspaper's Freedom of Information Act request for cancer registry incidence data by zip code, type of cancer, and date of diagnosis. The court held that the request was consistent with the purpose of surveillance under the Cancer Registry Act, “to monitor incidence trends of cancer and to inform citizens about the risks, early detection, and treatment of cancers whose incidence is known to be elevated in their communities.” The court agreed to the release of data, despite the fact that a computer expert had been able to identify individuals from the data set: “without some sense of the magnitude of the alleged threat … it is very difficult for this court to determine whether the data in question reasonably tends to lead to the identity of specific persons.” The state has appealed the decision. This paper will discuss the tensions between the privacy rights of the individuals and the community's right to asses potential cancer clusters; it will frame this discussion in terms of the broader question of regulation and its limitations.

Learning Objectives:

• Discuss contemporary controversies regarding the use of personally identifiable data
• Discuss ethical and regulatory frameworks governing the use of personally identifiable data that does not clearly fall within the scope of human subjects research

Keywords: Surveillance, History

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.