KEY POINTS:
Health officials and academics last night stood by Auckland City Hospital's decision to warn 43 patients they are at risk of developing a fatal brain disease even though the chance of this happening is minuscule.
Health and Disability Commissioner Ron Paterson says the Auckland District Health Board (ADHB)
did the right thing when it advised the patients there was a very remote chance they were affected by Creutzfeldt-Jakob disease (CJD).
"I think the district health board needed to weigh up the likelihood in this case that the information would leak into the public domain," he said.
"Neurosurgical patients and their families would have suffered a great deal more but I think the ADHB took a very responsible approach."
Once a person is infected with CJD it can take years or decades before symptoms appear. The disease causes cells to die, leaving holes in the brain, and destroys muscle control and movement, leaving victims with severe dementia.
Mr Paterson said it was difficult to say if the health board would have have been negligent had it not told those possibly affected.
"I think they certainly would have been criticised if the information had become public and patients and their families had not been told in the first place. As one could imagine, there could be someone suffering great shock and could have accused them of being negligent."
Dr Grant Gillett, professor of biomedical ethics at the University of Otago, said the Auckland board "absolutely took the right steps".
"It's important that the people get the information that is relevant to their future in the context where all the uncertainties can be discussed rather than it all becoming a matter of panic." Professor Gillett said any reasons for possibly not disclosing a patient's information were complex.
"But if a person could blow it up in their minds so much that it would totally destroy them then I might have recorded those as reasons for not sharing the information.
"What any subsequent tribunal would be interested in is did I acknowledge what my normal duties would be and did I carefully take account of the things we would expect a responsible clinician to take account of?
"You have to go with the judgment of the person in the situation."
An associate professor of philosophy at the University of Auckland, Dr Jan Crosthwaite, said there were two lines of argument in telling those possibly affected.
"One might assert that people have a right to know about something which affects or may affect them, particularly something so serious.
"It is paternalistic rather than respectful of autonomy to decide for someone else that the likelihood of some bad consequence is so little that they don't need to know it is a possibility."
Professor Crosthwaite said the comparative harms of telling or not telling were debatable.
"If you weren't told and later did suffer the unlikely consequences you would be very distressed - both about the consequences and about the fact that you had not been warned.
"Against this is the point that you suffer the distress of anticipating what may not happen, which you could have been spared if not told."
