Right to know for patients at CJD risk

October 11, 2001 The Guardian (London) by James Meikle
People are to be given the right to know if they have been exposed to the risk of catching the fatal human form of BSE through contaminated surgical instruments, blood or blood products, under proposals published by government advisers yesterday [http://www.doh.gov.uk/cjd/consultation/cjdmanagement.pdf].

Only patients deemed high risk will be directly informed but others who may have undergone operations using the same equipment as someone later diagnosed with vCJD will be able to ask whether they are on a database of those exposed to contamination. Current guidelines suggest there is no benefit to patients knowing, while leaving it open to doctors to tell them.

Haemophilia centres have already offered patients the choice of knowing, with appropriate counselling.

The panel, chaired by Michael Banner, professor of moral and social theology at King's College, London, is trying to find a way through ethical dilemmas while obeying data protection rules and the need to protect patient confidentiality. He said most people should not be told automatically about possible exposure. "This is because the average incubation period for CJD transmitted between people is unknown but could be well over 10 years."

There is no reliable diagnostic test for people incubating the disease and the risks of transmitting CJD through medical procedures are very uncertain.

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