Cartwright Collective among groups concerned about proposed cervical screening law change before Parliament's health committee

People involved in cervical cancer screening will have direct or "look up" access to a national register, under legislation currently before Parliament. Photo / File

Giving more people access to a register of women who have had smear tests must come with strong privacy protection, leading health advocates warn.

People involved in cervical cancer screening will have direct or "look up" access to a national register, under legislation currently before Parliament.

Currently, nurses or doctors in primary care have to wait for clinical information to be faxed to them.

Parliament's health committee is considering the legislation and has received submissions, including from members of the Cartwright Collective, formed after the 1988 Cartwright Inquiry.

Judge Silvia Cartwright investigated allegations of inadequate cervical cancer treatment at National Women's Hospital, prompted by a Metro article, "An Unfortunate Experiment", by Sandra Coney and Phillida Bunkle.

Coney (now a Waitemata DHB board member) and Bunkle were among members who wrote the collective's submission.

"We are concerned the draft legislation extends access to a much broader and unspecified range of personnel," it stated.

"This includes not only health professionals but also administrative support staff, district health board staff, those providing support services … and researchers."

There did not seem to be a specified process for access applications, nor for the monitoring or tracking of those with access, the collective's submission stated.

"Extended access without clear justification … has the potential to reduce participation and ultimately the effectiveness of the NCSP [national cervical screening programme]."

Only three of 20 DHBs are meeting a target to have 80 per cent of eligible women screened for cervical cancer – a failure creating tension between some DHBs and the Ministry of Health.

In its submission, the Federation of Women's Health Councils said it isn't convinced there are enough safeguards planned to manage the increased privacy risk.

"No indication has been given as to the increased number of people likely to have direct access to the [register]," the federation's submission states. "We disagree that the number will be only 'slightly increased'."

The Auckland Women's Health Council submitted it wouldn't be happy with the law change unless there were "stringent access regulations and a regular audit process to be applied to the accessing of the [register] by whom, at what frequency and for what purpose".

The council expressed "considerable disappointment" it wasn't involved in consultation on the legislation.

Under the Health (National Cervical Screening Programme) Amendment Bill, people given access to the register would remain subject to the Privacy Act, health regulations and employment law.

The National Cervical Screening Programme manager would have administrative control over granting access, and access would remain auditable.

The legislation had cross-party support at its first reading and is supported by the New Zealand Medical Association. Privacy Commissioner John Edwards has no outstanding privacy concerns with the legislation.

"Providing more people with access to the register comes with some increased privacy risk. I am satisfied the Bill provides for this risk to be mitigated through appropriate operational controls," Edwards submitted.

He encouraged the ministry to consider a first principles review of the law governing the collection, use and disclosure of health information.

"Cervical screening is an outlier that is subject to greater restriction than other screening programmes and most health information … a more coherent approach would apply consistent principles across health information, as opposed to allowing special restrictions to develop out of particular history or societal significance."