Dilemma over telling CJD victims

THE GOVERNMENT faces an ethical dilemma after deciding to fund anonymous tests of tonsils and appendixes removed from thousands of patients, to see whether they are incubating the deadly "new variant" Creutzfeldt- Jakob Disease (v-CJD).

The results could leave it in a position where it is obliged to tell healthy people they are harbouring an incurable illness that will destroy their brain. Professor John Collinge, a member of the Government's advisory committee on Bovine Spongiform Encephalopathy and CJD, warned last night that the results "can only be bad news".

He explained: "If you don't find any that are positive, it doesn't mean you are in the clear, and if you find just one in a thousand tests positive, it implies that 50,000 people in Britain are incubating the disease."

Even specialists in CJD and BSE are unsure how they would interpret results. Professor Collinge said that a huge positive result - such as 50 per cent showing infection - could either mean that many people are simply "carriers" who do not develop the disease, or that they will take much longer to show symptoms.

The new tests will be carried out on more than 1,000 stored appendixes and tonsils taken from British patients over decades of surgery. Each year about 44,000 appendectomies and hundreds of thousands of tonsillectomies are carried out.

The move follows the discovery of v-CJD infectivity in appendix tissue by doctors at Derriford Hospital, Plymouth. They were testing a sample from a patient who had his appendix removed in September 1995 and developed v-CJD in May 1996.

Normally, brain tissue is tested for the "prion" protein that is the disease's signature. But when Dr David Hilton of the hospital's pathology department tested the appendix, it confirmed the diagnosis - although the patient had not shown any signs of v-CJD when it was removed. Ten appendixes from other people tested negative. Their discovery is reported in The Lancet medical journal, published tomorrow.

Since 1994, 27 people have died of v-CJD in Britain. It is a fatal illness for which there is no treatment. It leads to gradual loss of physical and mental abilities, until the victim is left unable to move, speak or swallow.

The incubation period between the time of infection and the first appearance of symptoms is at least 10 years, and may be up to 40 years. The maximum exposure to BSE through food occurred during the 1980s, said James Ironside of the National CJD Surveillance Unit yesterday.

Officials at the Department of Health, which is funding the latest tests, are thus wrestling with the problem of whether they should in future tell people if a biopsy test on removed tissues shows they are incubating a form of CJD.

Sir Kenneth Calman, the Chief Medical Officer, avoided the question yesterday. "The biggest question that we have at the moment with v-CJD is its prevalence. This [anonymous test] is one way of getting into that. If samples are identified as [v-CJD] positive, then we will need to change the nature of the study. In future testing we might tell their GP."

Scientists are still looking for a reliable test for prion protein in blood, and for individual tests.

A mother described yesterday how she looked on helplessly as her daughter died of v-CJD. Pat Mellowship, 58, nursed Donna for three years after she was reduced to a "five foot baby".

In a statement to Hornsey coroners' court, north London, Mrs Mellowship said: "My daughter had always been a keen consumer of meat. She always bought brand name products which were cheapest at the time." Donna, 34, from north London, died last December.