NEWS MEDIA UPDATE · ILLINOIS · Freedom of Information · Feb. 9, 2006
Cancer registry data must be released
Feb. 9, 2006 · Portions of a state registry of victims of neuroblastoma, a rare childhood cancer, must be made public because state health officials did not show that releasing the information would violate patients’ privacy rights, the Illinois Supreme Court ruled unanimously Feb. 2.
The general public could not identify the cancer patients using the information requested — type of cancer, ZIP code and date of diagnosis — even though an expert witness for the Illinois Department of Public Health used the data to identify a majority of the victims, the court ruled.
The department denied the Southern Illinoisan‘s 1997 request for the data, claiming the information was exempt from disclosure under the state Freedom of Information Act because it was collected in a medical study and because patients could be identified. Latanya Sweeney, a computer scientist who was an expert witness in the case, identified the names of the cancer victims by analyzing several databases and the specific data requested by the newspaper. She testified that as many as 87 percent of the individuals could be identified.
But the court did not find that the average citizen would be able to identify patients easily enough to outweigh the public interest in releasing the information. “In the absence of more definitive proof that individuals of the general public would have the ability to duplicate Dr. Sweeney’s multistep experiment, our decision is guided by the public policy of this state,” Judge Mary Ann McMorrow wrote for the court.
Although the state’s “Registry Act” makes confidential the “identity, or any group of facts that tends to lead to the identity, of any person whose condition or treatment is submitted to the Illinois Health and Hazardous Substances Registry,” the court ruled that the use of the word “tends” means that in writing the law, “the legislature deliberately allowed for flexibility.”
The paper, a daily in Carbondale, Ill., requested the records after families of neuroblastoma patients won a lawsuit over exposure to coal tar dust causing the rare form of cancer in some children, said Donald Craven, the Southern Illinoisan‘s attorney. The newspaper wanted to know if there were any other communities with cancer clusters.
“We are very pleased with the ruling . . . and very gratified that the court affirmed the ruling that the material should be released,” Craven said.
The records have not been released yet. If the state does not petition the court for reconsideration, the court’s decision will be final 30 days after the ruling.
The Department of Public Health is “very disappointed” with the decision and is “considering all options,” including complying with the ruling, said Melaney Arnold, a department spokeswoman.
(Southern Illinoisan v. Illinois Dep’t of Public Health; Media Counsel: Donald Craven, Springfield, Ill.) — KV