Legal protection of names could foil proposed study

By FRANCESCA MOLD

GISBORNE - A watertight legal barrier protecting the identity of women registered with the national cervical screening programme could stymie a proposed investigation of Gisborne cancer cases.

During cross-examination of public health specialist Professor David Skegg at a ministerial inquiry, it was revealed that Section 74a of the Health Act, passed in 1993, prevented the release of information about cervical cancer cases held by the national register.

This section may restrict a plan for a new study reviewing 42 cases of invasive cervical cancer in the Gisborne region since 1990.

The study would trace the screening history of the women, to show whether their cancer had developed despite having the slide read as normal.

Professor Skegg said researchers were expecting to discover in the next few days whether approval for the study had been granted by the Tairawhiti ethics committee.

After that, researchers would need approval from the Health Funding Authority to access information about the women, which is held by the cervical screening register.

However, authority lawyer Kim Murray said section 74a of the Health Act would mean the organisation could not approve any application for the information.

Professor Skegg said he believed there were a number of ways the legal barrier could be addressed.

"I find it extraordinary in the year 2000 that we still have a problem using a register established for this purpose," said Professor Skegg.

"But I hope if this inquiry felt the study would throw light on the situation the Health Minister would issue a directive [to make the information available]."

Mr Murray said it appeared the minister had no power to override the legislation.

Professor Skegg said that in the past the legislation had created major problems for researchers and had meant evaluation plans for the programme could not be fully implemented because vital information had been withheld.

"It's a nonsense and it's been like this since 1993."

Panel chairwoman Ailsa Duffy asked Professor Skegg whether the Ministry of Health had ever faced up to the problems created by the legislation.

"They've been aware of the problem, but clearly they haven't grappled with it effectively," he said.

Meanwhile, international cervical screening expert Euphemia McGoogan, who chaired a 1993 inquiry into cervical cytopathology at the Inverclyde Royal Hospital in Greenock, Scotland, began her evidence yesterday.

She will continue today, after the panel reconsiders whether to accept a document comparing laboratory smear reporting in 1994.

The document was presented last week in a "sanitised" form, with names and regions of laboratories deleted.

Bruce Corkill, the lawyer for women affected by slide misreading, asked that the full document be made available.

The ministry will report today the results of its attempt to contact all laboratories to discover whether they opposed the public release of the document. At least two laboratories are known to have objected.

Professor Skegg also revealed yesterday that New Zealand had the sixth highest death rate of 173 countries.

Despite the high rate, New Zealand had given a very low priority to its cancer registry, which was set up under a private member's bill, led by former National MP Christine Fletcher, in 1993.

The bill was initially opposed by the Ministry of Health, said Professor Skegg. However, the Public Health Commission was able to persuade then Health Minister Simon Upton to direct the ministry to support the legislation.

Professor Skegg said the registry, which records cancer incidence and mortality rates, was in a "marginal state of health."

It was poorly funded and received a low priority within the New Zealand Health Information System.

-----

More Herald stories from the Inquiry

Official web site of the Inquiry