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

Abstract #121657

Barbara Allen, PhD, Graduate Program in Science and Technology Studies, Virginia Tech- National Capitol Region Campus, 1021 Prince St., Room 216, Alexandria, VA 22314, (703) 706-8115, ballen@vt.edu

During the past five years, there has been an on-going lawsuit and set of appeals over the control and dissemination of cancer data by the Louisiana Tumor Registry. The legal dispute began when a group of citizens and medical researchers wanted access to the state cancer data by zip code as they had anecdotal evidence of elevated pediatric cancer rates in communities near petrochemical plants.(Louisiana is a major chemical producer and one of its main industrial regions is popularly called ‘Cancer Alley'.) Analysis of the documents accumulated during the legal battle reveal important, but ambiguous rules and regulations governing cancer data nationally. Also revealed is the scientific reasoning that each side used to argue their case regarding access to the data. My analysis looks at the wider political and social context of the lawsuit for clues as to why this debate became so heated, with so much at stake on both sides. Additionally, I present some comparative research on how cancer registries control data in a number of other states and examine how both the U.S. “National Cancer Registries Amendment” and regulations within the U.S. Department of Health and Human Services allow for a varied interpretation regarding the openness of public data. My analysis will show that this ambiguity is problematic both scientifically and from a health policy perspective particularly when assessing the relationship between human exposure and proximity to toxic sites.

Learning Objectives:

• The audience will be able to understand both sides of the debate over the control of epidemiological data, including issues of privacy and data assurance. They will also see how 'hidden' data is easily over interpreted for political gain and how both political motivation and concern for "proper science" motivates the actions of both sides.

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.

Recorded presentation