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State high court rules cancer records must be released

By The Associated Press

SPRINGFIELD, Ill. — The Illinois health department must release information that might reveal "clusters" of a rare cancer, the state Supreme Court ruled yesterday, the latest step in a legal battle that began more than eight years ago.

The court said the Illinois Department of Public Health failed to prove the documents were exempt from the state's Freedom of Information Act. "The FOIA is to be interpreted liberally, and the exemptions to disclosure are to be interpreted narrowly," the court ruled in Southern Illinoisan v. Illinois Department of Public Health.

The (Carbondale) Southern Illinoisan first asked for the information in October 1997. The newspaper was trying to learn whether cases of neuroblastoma were more common in areas contaminated by a certain kind of pollution.

Publisher Dennis DeRossett said he was pleased by the ruling — "not for this newspaper but for the public's right to know."

The health department had not decided yesterday afternoon whether to comply with the court's ruling or take further legal steps, such as asking the court to reconsider, said spokeswoman Melaney Arnold.

She said the department still believed releasing the information could lead to a violation of the privacy of the cancer patients and their families.

"If hospitals and doctors believe we are going to release all the information we get, they might be hesitant to provide the information and wouldn't report to us," Arnold said.

The Southern Illinoisan did not ask for the names or addresses of neuroblastoma patients. Instead, it wanted their ZIP codes and the date they were diagnosed. The newspaper has agreed not to identify the patients if it learns who they are.

The newspaper requested the information after a lawsuit was filed because four children in the central Illinois town of Taylorville contracted neuroblastoma. Their parents blamed the illness on pollution from a process that turned coal into a gas that could be burned for heat and light.

The Taylorville lawsuit ended in 2002 with the utility company AmerenCIPS agreeing to pay $3.2 million to the four families.

Southern Illinois includes areas with the same "coal tar" pollution, and the newspaper wanted to know if there was any sign of neuroblastoma in those places.

The health department refused to release the information, arguing it could be matched with other data to identify cancer patients.

A judge ordered the agency to release the information in 1998, but that ruling was overturned on appeal. More court battles followed, and the agency was again ordered to release the records in 2002.

That ruling was appealed to the state Supreme Court.

Without any written dissents, the high court rejected the Public Health Department's claim that ordinary people could use the information to track down patients' identities.

The department hired a computer science expert to see if she could find out their names. She largely succeeded but spent about $2,000 on the project and acknowledged that she could find the names through public information, independent of the department's cancer records.


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State judge orders release of information on agreements between doctors, medical malpractice plaintiffs after newspaper sues for access. 01.27.04

Communities adjust to medical-privacy laws
Practices which helped neighbors stay connected — such as printing, broadcasting of hospitals' patient lists — are largely gone in wake of HIPAA. 03.14.05

HIPAA & newsgathering

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