Author(s)

B. L. Allen

Abstract

In the U.S., states regularly collect cancer data for statistical and analysis purposes. Ideally, this publicly funded information should be available by law to citizen groups and qualified researchers. Using the example of the Louisiana Tumor Registry (LTR), my research will show that scientists have been denied full access to cancer data thus preventing important environmental health assessments. Louisiana is a state with a large and geographically concentrated petro-chemical industry that many health scientists suspect may have some relationship with elevated cancer rates. Citizens have taken the LTR to court and have waged a lengthy legal battle for the data. Analysis of the documents accumulated during the legal battle reveal important, but ambiguous rules and regulations governing cancer data nationally. 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 the proximity to toxic sites. Keywords: cancer registries, public understanding of science, Louisiana Tumor Registry, protected health information, Cancer Alley, epidemiology, public records access. 1 Introduction Questions about the effects that exposure to toxic chemicals have on the human body resonate in our environmentally-conscious culture. But the truth is, we know very little about the effects that many chemical pollutants have on the body, especially in low dosages and over time. With a few exceptions, we have no idea how they impact human health, either individually or synergistically except in extreme conditions where one is literally poisoned by them.

Keywords

cancer registries, public understanding of science, Louisiana Tumor Registry, protected health information, Cancer Alley, epidemiology, public records access.