Nothing should concern the Gisborne cervical cancer inquiry so much as women's right to know. Only full disclosure will lead to the restoration of public trust, the objective of this and every such investigation. It is odd, therefore, that an inquiry which has generally proceeded in a considered and careful manner should occasionally lose sight of this paramount concern. Yet again, it has placed a higher premium on health profession demands for secrecy than the potential for women's lives to be at risk.
The inquiry has suppressed the name and location of another laboratory whose reading of cervical smear slides is being investigated. The Health Funding Authority, requesting the suppression, said a complaint against the laboratory related to one woman and was being dealt with confidentially. It would not, it said, be appropriate to release the name of the woman concerned or the laboratory.
Concern for the patient is understandable, although it was not stated whether she had sought privacy. If this had been requested, name suppression could have been provided. There was no good reason, however, to protect the laboratory - and its reputation. The complaint against it is not, of course, evidence that smear slides have been misread. Neither, however, is there evidence that it will gain a clean bill of health. Publicising its location would at least allow patients to seek a retest if they were apprehensive about the reliability of the initial result.
Keeping the laboratory secret means that women throughout the country have further reason to be fearful. Not for the first time they have been kept in the dark as pleas for immunity from the normal precepts of accountability have prevailed. Suppressed earlier were the names and locations of laboratories which reported a lower proportion of high-grade abnormalities than Dr Michael Bottrill's Gisborne laboratory. Again, this was not evidence that these laboratories were misreading slides. Again, however, the secrecy meant all women had cause to wonder about their test results.
As alarming as such determinations have been suggestions to the inquiry of the extent of the damage wrought by the health profession's penchant for secrecy. Professor David Skegg, an Otago University epidemiologist, put this most trenchantly while condemning the attitude of ethics committees which, on grounds of privacy, have blocked research that would have allowed evaluation of the cervical screening programme.
In the case of Gisborne, Professor Skegg was told that he would have to laboriously gain individual consent. The upshot of this restriction is the absence of any monitoring of the screening programme in the past decade. The cost, Professor Skegg said, could have been the unnecessary deaths of 100 women.
Even if the death toll was just one, that is a tragic price to pay for a ludicrous misreading of the privacy laws. It is absurd to suggest, as ethics committees did, that more weight should have been applied to privacy concerns than the public good. They were, however, far from the first health professionals to find misapplication of the privacy law a handy and protective ally.
To her credit, the inquiry head, Ailsa Duffy, QC, has recognised the true nature of such recourse. In all likelihood, she will recommend that researchers be able to audit cases of cervical cancer without first approaching ethics committees for approval. In effect, women joining the screening programme would assume their information would be available to researchers.
Few women are likely to object to this. The revelations of the Gisborne inquiry have merely emphasised the need to implant quality assurance into the screening programme. Equally emphatic have been the demands of the women affected by Dr Bottrill's mistakes for full and frank disclosure, no matter how harrowing the detail. Censorship in any shape or form is a disservice to them and the public good.
<i>Editorial:</i> A woman's right to know is paramount
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