After two investigations by the Scottish information commissioner, Kevin Dunion, plus appeals to the Court of Session in Edinburgh and the House of Lords in London, numbers that might shed light on the links between children’s blood cancer and radioactive pollution have been kept under wraps.
The Scottish Green Party, which made the original request, is frustrated and annoyed. The Scottish Health Service, which fought to keep the information confidential, sounds relieved.
Back at the beginning of 2005, Michael Collie, a researcher for the then Green MSP, Chris Ballance, asked the Scottish health service for the annual incidence of childhood leukaemia in every census ward in Dumfries and Galloway from 1990 to 2003.
They wanted to test widespread suspicions that the debilitating and potentially fatal cancer could be caused by radioactive contamination. Plutonium from the Sellafield nuclear plant in Cumbria washes up on the Solway coast, and has been detected around the shoreline.
The health service, however, refused to release the information on the grounds that the small numbers of cases in particular areas might enable individual patients still alive to be identified. So Collie lodged Scotland’s first freedom of information appeal with Mr Dunion’s office in St Andrews on 27 January 2005.
After a six month investigation Mr Dunion concluded that the information could be released in a way that would not identify individuals. But the health service appealed to the Court of Session.
The Scottish court upheld Mr Dunion’s findings, but the health service then appealed again to the House of Lords in England. Five law lords concluded in July 2008 that Mr Dunion was wrong in law, and ordered him to rethink his decision.
They argued that the form in which the information would be released amounted to sensitive personal data, that should be kept confidential under the 1998 Data Protection Act.
As a result Mr Dunion has conducted a second investigation, the results of which were sent to those involved last week. This time he agreed with the House of Lords, and ruled that the information as requested should not be released.
He did, however, order the health service to provide aggregated statistics for the whole Dumfries and Galloway Health Board area. But they will not show the very local effects that are suspected.
“I regret that it has taken so long to finalise this decision, particularly when your application was the first to be made,” wrote Mr Dunion to Mr Collie. “I appreciate how frustrating the whole process must have been for you.”
The saga had helped resolved some issues over the form in which information had to be provided, but there were still problems. “Confusion over the definition of personal data is likely to remain for some time,” said Mr Dunion.
“I don’t think there is anything at all for us in this,” commented the former MSP, Mr Ballance. “We wanted to test the hypothesis that childhood leukaemia rates are higher by the coast than inland, because of radiation from Sellafield blown in on sea spray.”
He said: “An aggregated set of statistics for the area will tell us nothing except that they are about in line with national statistics. I think we know that already.”
Mr Ballance argued that local communities had a right to their own health statistics. “The small numbers at issue here are a problem, but I don't accept that there is no better way round it,” he stated.
The NHS National Services Scotland’s medical director, Dr Marion Bain, accepted this had been a difficult request. “We are fully supportive of the fundamental principles underpinning freedom of information,” she said.
“At the same time we have a clear duty to respect and preserve patients’ right to confidentiality.” The information in the form now requested by Mr Dunion would be released.
“We will continue to work closely with the information commissioner to make as much information available as possible where this is consistent with protecting patient privacy,” Dr Bain added.