People with HIV will have details of their names, treatments and status placed on a central national register if government plans for a new medical database go ahead.
Sensitive personal information could be handed over without the consent of patients or doctors, a top computer scientist has warned.
Cambridge University Professor Ross Anderson revealed how during the 1990s the NHS secretly created a national register of everyone being treated for HIV.
The secret register broke laws going back to World War I that guaranteed sexual medical privacy.
After Anderson and leading doctors challenged the Health Department about the legality of the register, he said, the government passed a new law allowing ministers to take control of personal health information and move it around as they wished.
He believes that the HIV register is still unlawful, as European laws prohibit collecting data without patients’ consent.
Anderson and Phil Booth , National Coordinator of the NO2ID campaign, which is fighting against the national identity scheme, told an audience in Brighton last week that those affected and at risk should fight back, by asking their doctors not to allow personal information to be copied to the new database, called “SUS.”
SUS stands for the “Secondary Uses Service.” The SUS computer system will be run by private contactors, and will contain summaries of all hospital treatments in England and Wales . The NHS also plans to copy details of local GP’s treatment record into the central system.
Hundreds of thousands of health staff could then access the system. Campaigners believe that people with HIV would be at particularly serious risk if police, insurers, or airlines got hold of their information.
Ten people with HIV have already faced prosecution for transmitting the virus.
HIV positive people who travel to the United States without declaring their status could face imprisonment on arrival if airlines acquired and passed on health information under arrangements devised for fighting terrorism.
“The remedy is simple,” Booth told PinkNews.co.uk
“Don’t get SUSsed.”
He appealed for people with HIV to join a new campaign to protect their rights.
“The politicians and health bureaucrats are ignoring serious problems”, he said. “The new system is corrosive of trust.”
By deterring people from getting diagnoses and treatment, SUS would “threaten the health of the people the NHS is there to help.”
NO2ID helped set up TheBigOptOut.org campaign, which has campaigned for patients to tell GPs not to pass personal information into the central computer.
The campaign, now supported by thousands of patients and GPs across the UK, is led by Oxfordshire health manager Helen Wilkinson, who discovered that the central NHS database had mistakenly identified her as alcohol dependent.
When she demanded that the records be expunged, she was refused treatment.