Turner Judy: Health (Screening Programmes) Amendment Bill — First Reading 
Turner Judy: Health (Screening Programmes) Amendment Bill — First Reading 
[Volume:606;Page:3500] 
JUDY TURNER (United Future) 
: 
 United Future believes that the National Cervical-screening Programme and legislation relating to it are incredibly important and contribute to the well-being of women between the ages of 20 and 70. United Future members recognise the need to ensure that the programmes are serviced at the highest most accurate and efficient manner in order to help both research and the women who undertake the screening process.  
United Future acknowledges the aim of this amendment bill as being to assist in increasing the quality of the operation and evaluation of the National Cervical-screening Programme in New Zealand. We see the legislation as doing that because it will appoint a nationally organised screening programme that will enable information to be accessed by operators and evaluators and its provisions will be able to be extended to other screening programmes which is a very far-sighted inclusion in the bill.  
United Future supports the basic principle of the bill which will address previous instances where the screening programme has failed due in part to a lack of routine evaluation as in the case of Dr Bottrill and the subsequent findings of the Cull report. We acknowledge that much personal tragedy instigated the inquiry that has resulted in this bill. We note that the bill asks for an increase in research data for the well-being of all women in New Zealand now and in the future. We also note the request that research data be more readily accessible within the research and evaluation team and that as a consequence in some instances women will have their cervical data used without prior approval. We have been assured that that will not be the norm but we will demand that privacy for women is paramount to this legislation and that data is accessed without prior consent only when there is no alternative. We would like to discuss further the processes involved with the reasonable attempts to seek consent from women for their results. We will be seeking to have this assurance detailed in the legislation. However we support the move to utilise all data available for the greater good of research and agree that the time and resources spent seeking consent may be better utilised. 
We would like to discuss further the privacy issue and the consent of information being released for research in the select committee. We understand the reasoning for the director-general having some discretion to release and work with data without the consent of every woman but we believe that this is a contentious issue and will seek further clarification and detail to ensure that all the rights are reserved. In supporting the national screening programme amendments we will be making every attempt to make sure that women are given every opportunity to have an absolute understanding of their rights and/or of the processes of the bill at the initial appointment made with the doctor. United Future will be looking closely at the way in which the implementation of the register is designed particularly at the way in which the manager will enforce and consent on information that is to be accessed by and shared amongst evaluators. United Future would like to understand further the selection of evaluators and the training that will be involved to ensure that the standards are nationally upheld. We understand that incomplete screening history impedes on the comprehensive evaluation of screening programmes. However we consider that the right to opt off is an imperative right for women. We believe that the screening programme needs to continue to advocate the benefits of having longitudinal results but we appreciate women’s rights to choose. We would like to look further into how data may be collected for those women who want to opt off. We believe that there is an opportunity to collect information about women who opt off as a qualitative longitudinal study that may show regional ethnic and age brackets that may be used as an evaluation to the success of the screening programme. 
We are also interested in the protection of Maori women by the kaitiaki group. We would like more information on how Maori protect and treat screening data appropriately. Is this aggregate data or data on an individual level? In what situations are they reliant to provide data for cervical-screening data analysis process? What if Maori women who identify themselves as Maori in health screening forms want to be included in the national screening programmes? Do they have the choice or are all Maori women automatically under the auspices and the control of the kaitiaki group? We would like to discuss further how research is often used to marginalise Maori women as quoted by the Ministry of Maori health manager Teresa Wall in the  
Daily News 
 on 4 April 2002. For the comprehensive development of health research and for the increased well-being of all women in New Zealand now and in the future United Future strongly supports the bill going to the select committee.