Editorial: Screening secrecy makes no sense

It is staggering that the ministerial inquiry into the misreading of cervical smear tests at Gisborne needs to go to court for the data it needs simply to do its job.

It is no less staggering that it should have taken until now - nearly a year since the inquiry began - to seek a ruling on its right to check the personal records of cervical cancer patients in other districts. What has the inquiry been doing all these months besides hearing the harrowing stories of women who have had smears falsely read by the former Gisborne pathologist Michael Bottrill?

It has been part of the inquiry's brief to determine whether the level of underreporting of potentially cancerous abnormalities at Gisborne was an isolated problem or was occurring in other districts. The question was always capable of putting the inquiry at loggerheads with the law setting up the national cervical screening register. That law, incorporated as section 74a of the Health Act, says no person may disclose information on the register that identifies a woman, except with her consent, although there are exceptions.

Her smear results can be disclosed to her doctor for stated purposes, or to send her a reminder to have another test, or - and this may have given the inquiry false confidence - in accordance with regulations governing the study of cancer. In the opinion of the Crown Law Office none of those exceptions permits the Director-General of Health, Karen Poutasi, to comply with a request from the inquiry for the records of women in other districts. So the inquiry is obliged to go to the High Court for a ruling on whether the act under which the inquiry was set up overrides that which set up the cervical screening register.

Nobody is likely to oppose the application, certainly not the Director-General, who would dearly like to give the inquiry the data that could provide her with some useful conclusions. And it may be assumed that few cervical cancer victims would object to the proposed review of their smear records. If emotions at the Gisborne inquiry are a guide, women elsewhere will be anxious to hold to account any pathologist who missed signs of abnormalities that could have been treated before they turned cancerous.

It can only be wondered who the confidentiality provisions of the screening register were designed to serve. But at least it is not hard to remember how they came about. The Cartwright inquiry, which gave rise to the national screening programme, also promoted principles of informed consent in health treatment generally. Thus section 74A of the Health Act not only protects the confidentiality of the smear register, it also insists that every woman is informed that her results will be forwarded to the register and gives her the right to refuse consent even to that.

If she objects, the doctor taking her smear must give her written acknowledgment of the objection, send a notice of her objection with her specimen to the laboratory, which must not send her result to the register. So much red tape for so little purpose, and now it is causing no end of frustration for another inquiry into the same cancer. The Gisborne panel has been trying to gather wider data since May. A well-recognised researcher, Professor David Skegg, of the Otago Medical School, has been waiting all that time to assess underreporting in other regions. The Director-General now finds she is legally able to give him identifiable patients' data from the cancer register but not from the cervical screening register. The law makes no sense.

Yet it may be too much to hope that the High Court can dispose of the anomaly simply by giving supremacy to the powers of inquiries under the Health and Disability Act. There is now also the Privacy Act to consider along with the Official Information Act and the Bill of Rights Act. Ultimately another act of Parliament may be needed before the inquiry can proceed much further.

But the evidence from Gisborne alone has already brought a call for the national screening programme to be regularly audited. Auditing means checking the smears of those who develop cancer to see whether the warning signs were noticed when they should have been. Solutions of that kind cannot be contemplated until we are rid of excessive secrecy.

Herald Online feature: Gisborne Cancer Inquiry

Official website of the Inquiry