Professor Julian Peto said that if today’s data protection legislation had been in force 20 years ago, life-saving research would have been impossible.
For example, tamoxifen is the major single factor that has led to the 30 per cent fall in the number of British women dying prematurely from breast cancer, but it only works in women whose breast cancers are what as known as “oestrogen receptor positive” – about two-thirds of the total.
Professor Peto, of the Institute of Cancer Research, in London, said: "It was just as important to establish which patients tamoxifen wouldn’t help as well as those it would because it has toxic effects. It would have been impossible to establish this today. It would be illegal."
He told the meeting that doctors and hospitals had started to withhold data required for cancer research for fear of legal action. "No-one benefits apart from the lawyers and the professional ethicists," he said.
"When you ask the general population they’re astonished and disgusted to learn what is going on under the guise of ethics. They want us to have their data."
Access to medical records and tissue samples helps scientists to track the development of disease and to establish what makes certain people susceptible. Data from the last 40 years could play a critical role in research. For example, it could help to establish if specific genes are associated with different forms of cancer or heart disease or if exposure to certain chemicals is associated with certain types of disease 20 or 30 years later.
Professor Peto said: "In effect, all this material might as well now be thrown away, but it would be an international catastrophe if this were to happen. Some hospitals are now thinking about this because storing biological material is very expensive. Why keep it you’re not allowed to use it?"
Professor John Smyth, a consultant medical oncologist at the Western General Hospital, Edinburgh, in Scotland, told a press conference that a cancer registry in Scotland had established that there had been a 20 per cent reduction in the number of women dying from melanoma, the most severe form of skin cancer. Cancer registries were set up to track cancer and comprise data from hospital records, family doctors and death certificates.
The UK General Medical Council, which regulates the medical profession, recently issued a directive that none of these data sources should be given to cancer registries – apart from death certificates – without the informed consent of patients. This will mean that in future researchers will be denied access to records showing which treatments have been successful – and which have not.
Professor Dieter Hossfeld, President of the Federation of European Cancer Societies, described the German situation, as a “catastrophe”. Paranoia about data legislation was preventing important research and there was no national cancer registry in Germany.
European legislation, as "urgently needed", said Professor Peto, to restore the long established principle that consent was not required for confidential access to medical and civil records for bone fide medical research provided that:-