Scott Lynda: Health (National Cervical Screening Programme) Amendment Bill — In Committee 
Scott Lynda: Health (National Cervical Screening Programme) Amendment Bill — In Committee 
[Volume:615;Page:11278] 
Dr LYNDA SCOTT (National—Kaikoura) 
: 
 I wish to talk to the amendment I have put forward. Although we do want a gold standard programme we have to accept the history in New Zealand of informed consent. We have had previous inquiries which began with the Cartwright inquiry into the practices of Herbert Green who had with the very best intentions tried to investigate whether all women who had invasive cervical changes went on to develop cervical cancer or whether some actually regressed back and became normal again—no one knew at that stage. But he did not tell the women what he was doing. He did not ask for informed consent. That influenced opinion in New Zealand about the absolute necessity for women and men to be told what is happening to them and to be asked for their consent for treatment. That set the ground in New Zealand for us to have heightened awareness of the need for informed consent. That is why we have had a great deal of debate about the access to information. 
My amendment to clause 4 states: “If a woman decides that she does not wish to allow an evaluator to have access to her primary care records she can by way of informing the NCSP cancel her enrolment in the NCSP”—that is she can opt off—“or opt-off for access to primary care records alone but remain as part of the overall NCSP.” I have to say to United Future that it is not selfishness that drives women to want to opt off; people having access to their primary-care records is of intense concern to them. But I also understand that access to that information will be limited to what the director-general specifies and for audit purposes only. Evaluators can look only at what is provided by the primary-care provider in relation to the National Cervical-screening Programme. They cannot trawl through records to see what people’s mental health might be or what medications they are on but can look at only very specific information. They cannot disclose information except for the purposes of accessing that programme. 
My amendment tries to strike a balance. My fear is that a lot of women will opt off especially if the Greens raise a lot of fear in this regard. Women may opt off and if they opt off they are lost to the programme for good. There will be no opportunity for further explanation of the programme. There will be no ability if they develop cancer to go back to look at even their secondary-care level. I would not want to see that happen. I want women to stay on the programme. I want them to have confidence in the programme. What I have proposed is a middle road. I think only a small number will choose to opt off when they get the information but if they have concerns my amendment would allow them to stay there and it would allow them to still be recalled and still get the results. 
At the moment women can flag certain parts of the programme that they do not want to be part of; that is part of the programme that is there. At the moment there also is not any access to primary-care records. That has been the problem with doing an evaluation of the National Cervical-screening Programme. So my amendment is a way to get a compromise position. I understand why Julia Peters and Professor Skeggs said what they did; they want a gold standard programme. But we have to consider not just the scientists but also the women. We have to consider the history of New Zealand. 
My amendment may be a very good compromise position. I urge the Minister of Health to give it further consideration. When we have a review in 18 months if we find that women have opted off and that that is compromising the programme then we should look at this option for them if we cannot convince them that the access to their records is only for the purpose of evaluation not for research that it is only to ensure that the programme is effective in all layers and that it is only in response to what Euphemia McGoogan had suggested that we need in New Zealand. This could be a good example. If we get it right on the National Cervical-screening Programme what has occurred in this bill can go to other programmes.