Health (National Cervical Screening Programme) Amendment Bill

Part 2 makes amendments to the principal Act, which in this case is the Health Act of 1956—a rather elderly Act. The McGoogan report came from the inquiry into under-reporting of cervical cancer in Gisborne. Euphemia McGoogan is a world expert on cervical screening who came to have a look at our system, and made recommendations for change. Recommendation 11.14 states: “The Health Act 1956 should be amended to permit the National Cervical Screening Programme to be effectively audited, monitored and evaluated by any appropriately qualified persons irrespective of their legal relationship with the Ministry of Health. This requires an amendment to section 74A of the Health Act to permit such persons to have ready access to all information on the National Cervical Screening Register.”

Recommendation 11.17 states: “The Health Act 1956 requires amendment to enable the Ministry of Health and any appropriately qualified persons it engages to carry out (external or internal) audits, monitoring or evaluation of cervical cancer incidence and mortality to have ready access to all medical files recording the treatment of the cervical cancer by all health providers who had a role in such treatment.”

The crux of one of the major debates that we have had about this bill is the section about “ready access to all medical files”. If we want a cervical-screening programme that can be appropriately audited, then we need access not just to laboratory and hospital data, but also to primary-care records. We have heard Sue Kedgley’s concerns in this regard, and many in National’s caucus have similar concerns, because it comes down to the issue of informed consent, as opposed to the issue of having a gold standard screening programme that we know is effective. We will not repeat any of the mistakes that we had in Gisborne, and we will follow Euphemia McGoogan’s report and recommendations.

One of the issues is that this programme is an opt-off programme. From 1990 to 1993, it was an opt-on programme—people had to sign to say that they wanted to be part of the programme. Initially people joined, and then, over the months of 1993, the numbers of people signing up tailed off and dropped. The Ministry of Health decided to have an opt-off programme. That meant that when people had their first smear, they were registered on the programme. At that point they were sent a whole lot of information, and if they chose, they could opt off the programme. We have had a lot of debate about how women will be informed if we make changes to allow access to primary-care records. We have had meetings with the Minister, and from that, we have had a guarantee that a letter will be sent to all 1 million women on the programme, informing them of the changes in this bill, and giving them the option to opt off.

I have introduced a Supplementary Order Paper, because I believe that if a lot of women opt off, it will reduce the effectiveness of the screening programme in New Zealand, and means that we may have a higher incidence of cancer as a result. I have an amendment, which I will discuss later, that would allow people to opt off just that section relating to access to primary-care records. But there are other things in the bill that follow these two recommendations and the amendment to the principal Act. Those qualifications are that the evaluators have access only to the information that they specifically need to evaluate the programme. Those evaluators cannot use that data for anything else, and they are under the control of the Director-General of Health. Doctors initially had concern about access to primary-care records, as well. They also have been reassured by the fact that they will be able to have oversight over access to primary-care records, to ensure that if people are accessing notes they are looking only at the issues of cervical cancer, smears, and screening.

Part 2 is the heart of the bill. It outlines the operation of the National Cervical-screening Programme. It is really pleasing to see in section 112M, inserted by clause 4, that women having their first test will be fully informed about the procedure and the programme by the person taking the specimen. This information is absolutely essential to ensure that there is no decrease in the number of women on the screening programme. We must continuously try to reduce cervical cancer morbidity.

New Zealand First was very pleased, too, to see in the Supplementary Order Paper that an independent review of the National Cervical-screening Programme will be carried out every 3 years. We believe that an independent review is absolutely essential for the credibility of the programme, because it is only then that the women of New Zealand can have absolute confidence too in the process. The requirements for the review, as set out in sections 112OA to 112OD, inserted by clause 4, are very clear. In this way, New Zealand women can have confidence in the report that will be produced and provided by the Director-General of Health.

As has been mentioned by the previous speaker and the Minister of Health, we have been reassured by Ministry of Health officials that access to women’s primary health records will be controlled, and that a member from a practice will be present, or will locate that information, when the evaluation is carried out. The women of New Zealand can have absolute confidence that auditors will look only at the relevant information. These audits are needed if we are to have some confidence in the system. It does need that check. Above all, we want to ensure there is not a decrease in the number of women participating in the National Cervical-screening Programme, which would mean a reduction in the number of women being screened.

This screening programme is absolutely essential for the health of all New Zealand women. The whole aim of this legislation is to ensure that the programme is safe and that all components are safe. Therefore, primary-care records need to be subject to evaluation, as do the other components of the screening programme. Participation in evaluation is for the benefit of all New Zealand women. New Zealand First will be supporting this legislation.

First of all, I want to correct an impression the Minister gave when she said there was consensus on this bill amongst the parties. Certainly, there is not consensus on the part of the Green Party. We would love to be able to support the bill, and we worked diligently in the Health Committee to do so. We thought we would be able to do so, until, at the eleventh hour—in the last minute, after the bill had been sent to the select committee, after Cabinet had approved it, and so forth—suddenly amendments were introduced to the original bill. As I have said, this will effectively mean that the privacy of women’s primary health-care records—their general practitioner records—will be eroded. It will mean that an unspecified number of evaluators will be able to have automatic access to the health-care records of any woman who is enrolled in the National Cervical-screening Programme.

The Green Party’s view is that consent should always be sought before a person’s health-care information and records can be accessed. It has long been recognised that medical records contain highly sensitive and intimate information and need special protection. That is why we have a Health Information Privacy Code that protects the confidentiality of patient information and access to medical records. Indeed, New Zealand has been a leader in its approach to privacy—in particular, the privacy of health information. Well, this bill is the beginning of the erosion of the privacy of health information. Indeed, parts of whole sections of this bill are really there to require doctors to get around the Health Information Privacy Code, and to require doctors to hand over any confidential health-care or general practitioner records of any woman enrolled in the programme.

The New Zealand First member said that the women of New Zealand can have absolute confidence that the evaluators, who will automatically be able to access women’s personal health information, will be able to look only at relevant information. I would like the member to look at the fine print of the bill, because, in fact, when one looks at it one sees that evaluators will be able to access anything they decide is necessary to perform their functions. If we think about it, we know that sexually transmitted diseases are thought to be one of the main reasons why women develop cervical cancer. Therefore, evaluators could very easily argue that records of women’s sexually transmitted diseases—or anything else, such as previous pregnancies—could, in their view, be relevant to, and necessary for, their research or evaluation. There is no point in looking shocked, as some members are. We have been assured that that is a major reason why women may develop cervical cancer; therefore, it would probably be useful for evaluators to look at those records.

Now, in a great concession at the last minute, because of the concerns raised by women’s groups around the country—who, I might say, are up in arms at these last-minute amendments—there has been an amendment introduced that says that when the evaluators are rifling through the health information of any woman on the screening programme, a health practitioner may oversee that access—he or she “may” oversee it. We were told that person would be a doctor. I do not know about other members, but the doctors I know are extremely busy, and I am not certain they will have time to be standing around while the evaluators go through women’s files. But even if they did have time, I can assure members that this provision will not reassure many women. Women do not want to hand over to doctors the responsibility for deciding what confidential health-care information should or should not be handed over to authorities. Women want to make that decision for themselves.

I feel I need to answer some of the points raised by Sue Kedgley. She left the impression that somehow or other the bill that went to the Health Committee was changed by the Government or somebody else. I remind the Committee that the bill that went to the select committee underwent a very extensive consultation process by the members of that committee, who were drawn from all parties in this House. The amendments made by the committee were reported back to Parliament, and they were quite major changes to the original bill.

Members will recall that I saw the amendments and accepted the advice of the committee. As far as I was concerned, it was Parliament working at its best. It was legislation that a Government introduced, which was then looked at in terms of the evidence given to the select committee, and the amendments made by the select committee came back to this House as recommendations.

There were, of course, some things we wanted to improve, and I will talk about those in a moment. But Sue Kedgley said in her first speech tonight that at the last minute amendments were parachuted in with this Supplementary Order Paper. If the member looked at the Supplementary Order Paper, she would see that those amendments came directly out of the meeting I had—and she was there at that meeting—in my office. We discussed how we could address the outstanding issues, in order to make the legislation work as well as we could—as well as address the concerns our women members of Parliament had raised.

Muriel Newman is standing in for Heather Roy tonight, and Heather Roy played a very constructive part in the amendments. Her main concern was that there should be an independent review of this programme, and members will see in the Supplementary Order Paper that we have built in an independent review. That was a concern from ACT, and I had feedback from Heather Roy that she was happy with the way we had completed the bill.

Certainly, Lynda Scott was very keen to ensure oversight of the evaluators’ work with general practitioners, and that concern came through from the general practitioners themselves. We have ended up by giving general practitioners oversight. They might be busy people, but they said they would like the right to have that oversight, and we have included it in the Supplementary Order Paper.

Another important issue that was raised by women in my room that night—I think Dr Scott has already raised it—was ensuring that the women were given the information to opt out of the programme, which involves over a million of them, if they wanted to. Those were the three main concerns that came out of our meeting and into the Supplementary Order Paper that is now on the Table of the House.

Subsequent to that, Dr Scott tabled a Supplementary Order Paper, and I know it is one in which she has thought through the issues. She is trying to find a way through the issue of primary health records, and I gave her an undertaking that I would get advice on that matter and look at it seriously.

Over the dinner break we sought advice from Professor Skegg, and members will recall that the professor was an adviser to the committee throughout the hearings. I was unable to contact him initially, and first of all had a response from Dr Julia Peters. Dr Peters has also been an expert on the National Cervical-screening Programme. She was previously the clinical director of the programme, and is a public health specialist. I asked her, and finally Professor Skegg, to look at Dr Scott’s amendment, and both of them felt that if the amendment were to pass, it would compromise the evaluation of the programme. Based on that advice, I will not support Dr Scott’s Supplementary Order Paper, but I recognise the spirit in which it was presented. That advice from Professor Skegg and Dr Julia Peters is available if people would like to see it.

I think what has taken place here needs to be kept in perspective, along with what we are trying to achieve. The issue is whether we have a gold-standard cervical-screening programme for New Zealand women or whether we do not. The key, as Dr Scott has said, is that we have to be able to evaluate a programme properly. If we cannot, we do not know whether we do or not.

It may seem a little odd that I am taking a call in the Committee stage of this particular legislation as health is not a matter—nor is the Health Committee a select committee—that I have been heavily involved in. But I do want to make some remarks regarding Supplementary Order Paper 184 and, in particular, the way that this bill was brought to my attention by women’s health groups in my electorate that have very strong views on particular aspects of the bill. As a lawyer I approach most things from the point of view that no one should undertake any activity without informed consent, and I take this opportunity, before we get into the detail of some of the Supplementary Order Paper, to pay a very high compliment to my colleague Dr Scott, who has talked and walked me through this bill. She has brought me to the conclusion, in our discussions about the Supplementary Order Paper and from the discussions she had with the Minister, that in fact—initially, anyway—this programme is as good an option as possible to make available to the women of New Zealand. I do quite genuinely worry about the issue of access to primary health-care records. As I say, it is the hard work that has gone into the Supplementary Order Paper that has brought me to the conclusion that it should be supported.

The inclusion of the new section 112OA, “Establishment of NCSP review committee”, is a very good measure indeed because, if nothing else, it allows that review committee to be formed by the Minister. I like the fact that that has to be done at least once every 3 years, and I like the fact that it reviews not only the operation of the National Cervical-screening Programme but, more particularly, the evaluation activities. That is a very important point. As I said before, I do not pretend to be an expert on this matter, but I know good systems and bad law when I see them, and I believe that the inclusion of section 112OA will indeed be useful.

The transitional provisions contained in new clause 6, particularly clause 6(2) relating to the National Cervical-screening Programme manager having to take reasonable steps to ensure information about the programme and the effect of the Act is made available to women, are a substantial step towards informed consent. But they are not the final step in terms of informed consent, by any stretch of the imagination. I would have preferred to see that clause set out a requirement that a registered letter was to be sent to the women concerned, advising them about the effect of the Act and the programme. Members on the Opposition side of the Chamber are taking the Minister at her word that that is how clause 6(2) will be played out. I have assurances on that from the Minister—I see her nodding there—and I have assurances from my colleague Dr Lynda Scott, who I know has worked extremely hard on the production of the Supplementary Order Paper.

I know that my colleague Dr Scott is disappointed that her further amendment will not be included. From listening to the Minister’s explanation on that issue, I can say that this bill and Supplementary Order Paper have really exercised my mind in a way that, frankly, other legislation has not. Other legislation has not needed the careful attention that I have found myself giving to this legislation, largely because of the very strong representations that were made to me in my electorate. As I say, I am not an expert on this issue, by any stretch of the imagination.

I conclude by saying that National will be supporting the passage of this particular Supplementary Order Paper and bill. I will watch very carefully to see how the review and evaluation process unfolds and, more particularly, how the issues of informed consent are dealt with through that process. Once again, I congratulate my colleague Dr Lynda Scott on working so hard to try to address as many as possible of the issues that worried me in the short term.

I move, That the question be now put.

This is the substantial part of the bill, and it is important for all of us to comment on it. I have to keep coming back in my thinking to the context of this part, which is that while we have made some real progress in controlling cervical cancer in recent years, our outcomes still fall significantly behind those of many other countries. Of the 70 to 75 New Zealand women who die from cervical cancer each year, about 20 would not die if we had the same mortality rate in that regard as, say, Australia. Many of them are young women with children, and it is important to keep that figure in mind because the success of the screening programme benefits not just women but the families who rely on them.

During the Gisborne inquiry, Dr McGoogan explained that in her country each case is reviewed by the examination of medical records, without special consent being required. Consent to access the records is not an issue, because the evaluation is regarded as routine and as an essential public health measure. Professor David Skegg described the privacy issue in this way: “In New Zealand there is currently an extreme climate about privacy, and doctors are nervous about providing access to records without legislative authority.” He also commented that the current delays encountered by those who were attempting to trace women and seek their consent were “making the current audit almost unworkable”.

Every now and then I have to step back and personalise the issue in terms of myself. I ask myself this: if my test results were part of the small group needing to be reviewed, would I want to have the information that I needed additional medical diagnosis held up by an audit process predicated on privacy issues rather than on health need, or would I just want to be contacted as soon as possible, so that I could get on with addressing my health needs? The answer for me is obvious.

I do have before me the very well-intentioned amendment in the name of Dr Lynda Scott that would allow women to partially opt off—the intention being, I understand, to allow provision for women who want to have the benefit of the screening programme without the added safeguard of allowing evaluators to access their primary health records. I weighed that amendment up very seriously, because I fully believe that Dr Lynda Scott would not have put it up without serious consideration. But I have come to the conclusion that I cannot support it, not because it is not well-thought-through but because I have a real difficulty with the thought that women would be happy to take advantage of the millions of dollars this programme will cost the taxpayer, and then not allow their data to form part of the overall picture that may pick up a discrepancy and save lives. I believe that the safeguards that Supplementary Order Paper 184, in the name of the Hon Annette King, puts in place that mean that general practitioners’ records are accessed only under supervision provide very reasonable standards of privacy to individuals, without compromising the programme. It is interesting that even now general practitioner audits are conducted on general practitioners’ patient records, without patient consent. That process is already common practice, and we are now just applying it to this programme.

Safe screening programmes rely heavily on high levels of participation, and the issue of the common good is an integral part of their success. To legislate so that some women can opt out of their commitment to the common good is to legislate for selfishness. Although United Future in no way wants to criticise the motives of the member who proposed the amendment, we cannot support it. However, we have received assurances from the Minister that if sizeable numbers of women pulled off the programme over that issue, she would be willing immediately to redress it—by looking, for instance, at the suggestion that Dr Scott is putting forward. We would like to give the programme the chance to succeed in its present form.

I will finish my speech by quoting Professor David Skegg:

"The three members of the committee of inquiry in Gisborne recommended legislation to ensure that people engaged to carry out external or internal audits, monitoring or evaluation of cervical cancer incidence and mortality should have ready access to all medical files recording the treatment of the cervical cancer by all health providers who had a role in such treatment."

Part 2 is the heart of the bill. It sets out the mechanism for establishing the database, carrying out the screening procedures, analysing the samples, and referring on the results. Then, of course, the next stage is the treatment of women. I would just like to say to the Minister in the chair that, on behalf of the 1 million New Zealand women who are to be enrolled in the programme, I hope the shambles that presently surrounds the treatment of women with breast cancer does not occur to women who have been identified as having positive results with their cervical smear. It is very worrying that we have to send people who have such a serious illness to Australia to be fixed, and that we cannot treat them here in New Zealand.

In the discussion that the Minister has had during this debate she has referred to this programme as being gold plated. I hope she will not live to regret that statement, because I know that other national registers have very easily become a shambles. In the time I have been in Parliament we have debated a number of opportunities to establish national registers to sort problems out, but they are always fraught with difficulty. If the Minister is promising New Zealanders that this will be a gold-plated programme, then obviously we will hold the Minister and the Government to account on that.

The first thing I would say to the Minister is that I am very disappointed that she has failed, so far in this debate, to do what I called for her to do the last time I spoke: to explain exactly what steps she intends to take between now and 1 July this year, when this legislation gains the royal assent and comes into force, so that we can have some idea of the planning that is going on within the ministry to ensure that on day one this programme is launched with the minimum of problems associated with it.

The CHAIRPERSON (Hon Clem Simich): Would the member please come back to Part 2.

Mr Chairperson, we are talking about the implementation of the cervical-screening programme. I realise the Minister has been complaining about what I have been saying, but in the debate on the previous part I did ask the Minister to put her plan on the record by sharing with the Committee exactly what she intends to do on day one after this bill gets passed, regarding the steps she will take to ensure we do end up with a gold-plated cervical cancer screening programme.

The concern that my colleague Heather Roy, who sits on the Health Committee had was that in the original plan the Government was to set up, implement, run, and evaluate the National Cervical-screening Programme. The ACT party believes that it would not be very good to have the Government doing all that, and at an absolute minimum there should be an independent audit. We suggested that some of those services could be contracted out, but I realise this Government is ideologically opposed to private sector contracting. However, the bill does put down the way that the audit group review committee will be established, and I note the Minister is in charge of appointing people to it. I would like the Minister to explain—and again, I think this is a very important point—how we can be assured there will be some independence if the appointment process is up to the Minister, and what the difference is between having a committee that is established by the Minister and the Government running the review itself. I realise there is a difference, but I think it would be positive to put that on the record.

I want to deal with a couple of issues that do not seem to have had a lot of airtime so far. One of those is the issue of education. The bill does not actually say a lot about education, except in the negative, and that is in relation to the kaitiaki regulations.

One of the things that really shocks me as a woman of, now, 45 years—

Opposition members: Surely not!

Yes, and today too.

Opposition members: Happy birthday!

I am shocked that a lot of women have very, very little knowledge about cervical cancer. Basically, if they do not read about it in magazines, such as New Zealand Woman's Weekly, New Idea, or Woman's Day—I do not want to miss out any—then they generally do not know about it. The fact is that a lot of us women get our information about such things from women’s magazines, because we do not all come from a medical background. I am really concerned that we are not doing enough to educate women about cervical cancer. That is one of the problems. In particular, the issue of the kaitiaki regulations was brought up in the Health Committee. I mention that issue now, because to me it is an example of something that was brought in in an attempt to be culturally sensitive to the needs of Māori women—and I will not blame the current Government for it, because it is not its fault, and that is probably the last time it will ever hear me say that. Those regulations prevent information about Māori women's cervical cancer screening rates from being published or from being accessed without yet another very difficult and complicated process having to be gone through.

I was appalled to hear in evidence in the select committee that Māori women's cervical cancer rates were something like four to five times those of non-Māori. That is an absolute national disgrace. One of the awful things I learnt was that this information is not available out in the public. Nothing is being said about it. Partly, that has to do with the causes of cervical cancer. The causes seem to include the wart virus, which is so easily spread and is something that people need to talk about. I know we do not normally talk about these things in the Chamber, but this is actually extremely important. The virus is something that can be spread by men, so it is a male issue as well.

Until we stop hiding behind cultural sensitivity and start telling the truth, Māori women will be hard done by. They will be worse off than anyone else, because they are not getting the information. They are not being told the truth; nor is anyone else. That is a real crying shame. I am appalled we are not dealing with that issue. I note that in the report back to the House we made comment that some of us were very concerned that access to this information was not being made available to screening programme evaluators. It really does need to be. I am sure that once this bill becomes an Act it will have to come back to the House, because some tweaking will need to be done, on a cross-party basis. I hope that by that stage we will be big enough to own up to the causes of cervical cancer and do what we can to stop women from getting it.

This evening I was speaking to my sister, who rang me up to wish me "Happy birthday". She is a registered nurse and is somewhat older than I am. She said to me: “Judith, can you please mention the fact that women are getting cervical cancer at a much greater rate and a much earlier age than ever before.” She puts it down to the fact that women are engaging in more sexual activity at an earlier age and with more partners. That is something we need to deal with. I know that all the men around here are saying: “Ooh ah, that’s awful! How can you mention that, Judith?”. The fact is, it is true. Until one starts talking about the situation, it will not change. If what it takes to make any scrap of difference is for me to speak about it in the House, then I jolly well will. It is about advising women and girls, particularly those who are most at risk. We must be able to tell girls aged 12, 13, 14, 15, and 16 that cervical cancer is a very serious and often fatal disease that it can be prevented, but because they will not know whether they have it or are carrying the virus that causes it, they will have to be extra vigilant and extra careful. I really do hope that we can get some sort of message across. I would love to hear that the Ministry of Health is going to do something about it.

Dame Silvia Cartwright, who is now the Governor-General, wrote a very highly commended report some years ago in relation to cervical cancer, after that very thorough inquiry. She said: “If such a register is set up, it must be maintained under the strictest rules of confidentiality and privacy.” This bill does not allow that, because it is quite clear that the evaluators that it talks about do have the right to go through women’s medical records without their permission. Of course, the bill says that can be done only to get what is needed, but, in terms of medical records, what is needed is often amongst a lot of other stuff, and one cannot help but notice the other material when trying to get at what is needed.

The control supposedly is that the doctors have oversight. Well, when I go to my doctor there are 20 people in the waiting room. The doctors are shuffling through patients and they do not have the time to step aside. They will be reluctant to stand around while an evaluator trawls through a record to get what is needed. Even the Minister of Health, when she made her comments before, did not say that the doctor will be looking over the shoulder of the evaluator. She said that the doctor will have the right to have oversight. As my colleague Sue Kedgley points out, the word used in the legislation is “may”. So there is no guarantee at all that there will be proper oversight, and that information that women do not want accessed will not be accessed or seen.

My colleague also made the point that the women do not know what the information is that the evaluator will obtain. They are a bit in the dark and they are a bit worried about what that information might be. Judith Collins’ previous speech will not have made them any happier, because both Judith Collins and Sue Kedgley said that there does seem to be, in many people’s minds, a relation between sexual history and cervical cancer. So the evaluators and the researchers will be interested in that. I think that is one of the problems and one of the things that will scare people off. Because the evaluators are moving into an unknown area, and because sexual history is relevant, they might look at the files in that respect, and women will not want anything to do with it, whereas if women were given the right to buy in, to give their consent consciously, they might be more happy about the whole process.

A doctor’s skill is to elicit from a patient very personal information; that is his or her skill. A doctor can use this skill effectively because confidentiality is well built into the medical profession, and that is why the medical profession and many health practitioners are up in arms about this provision breaching confidentiality. It is very difficult for a doctor to get personal sexual information, because most people, for a start, are very embarrassed about disclosing much about their sexual history. Whether women or men, people are very embarrassed on that level, and often are very embarrassed about what might be the consequences if that information were to get out, especially if it involves things like sexually transmitted diseases and AIDS. Sometimes information about a male’s or a female’s other sexual partners is disclosed to the doctor as a health measure, but the last thing that the patient wants is for that information to get out amongst other people and, perhaps, back to his or her partner. People do not want that. The other function of a doctor, who might not be fully trained to the level of a psychologist, is to play a counsellor role to a lot of patients. All of those things mean we have to defend confidentiality very greatly.

I want to make three points in this 5-minute speech. First of all I would like to acknowledge the effort of my colleague Dr Lynda Scott, who is National’s spokesperson on health.. She has worked extremely hard to strike a balance between maintaining the success of this cervical-screening register versus the right of women to choose, for very personal reasons, to withhold their consent for their primary health records to be audited.

From my experience and knowledge, most women are very cooperative and want to ensure that a cervical-screening register will work. They cooperate in good faith, and I think that is proven by the number of participants in the present system. But to decide that because a woman, for whatever very personal reasons, has opted to say she does not want her private record to be audited, she will be expelled and excluded from participating in the cervical-screening programme is, I think, harsh and punitive. I wonder what women have done to deserve that. I would caution the Minister of Health, the Hon Annette King, a fellow woman, to consider that very carefully, to reconsider her decision in good faith, and to accept the amendment recommended by my colleague Dr Lynda Scott. Women do not usually hold back consent for selfish reasons, and I think we do have to respect women’s individual rights. Dr Lynda Scott has gone to extreme lengths to maintain that delicate balance.

My second point is that I was really disappointed with United Future’s Judy Turner, who said that women should be punished if, for any reason, they did not allow their primary health records to be audited—that they should be punished by removal from the register. I could not believe that a fellow woman MP would say that in Parliament. I felt really, really frustrated, and I hope United Future will reconsider its position. I think that men, for various reasons, would want their primary health records to be withheld, and we should, as a society, respect individuals being responsible for making those decisions. I urge the Minister of Health and United Future to reconsider, because we have to make a very difficult decision in trying to balance the right of privacy with the success of the cervical-screening system. I think Dr Lynda Scott has struck that very, very sensitive, fine balance. I think it would be a shame today in Parliament for any woman MP to say we should punish women because, for very valid personal reasons, they do not want to subject their primary health records to audit.

The last point I want to make is that I believe that the Minister of Health wants to engage women in the programme in good faith, so I appeal to her to pay special attention to women of ethnic communities and to consider ways of using a language that they understand, in order to get their consent. It is important to strike a balance between privacy and the success of the programme, and to ensure that women truly understand that their rights are respected. I appeal to the Minister to do that.

I emphasise once again that Dr Linda Scott has worked long and hard. It was a very difficult situation for the National caucus to strike a balance between the rights of women and the wish we have that the system should be able to be successful.

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.

I move, That the question be now put.

I would like to inform people that the Green Party has put up a Supplementary Order Paper. In it we have basically reinstated the informed-consent provisions that were originally in this bill for general-practitioner and primary health-care records. We have reinstated informed consent.

The bizarre thing is that nobody objects to evaluators having automatic access to laboratory records, to records that are on the screening register, or, indeed, to hospital records. The concern is around evaluators having automatic access, without consent, to highly confidential and sensitive medical health-care records. The extraordinary thing is that no good explanation or convincing rationale has even been put up as to why we would want to set aside the privacy of personal health information in this way. The officials have said that they need automatic access to 1 million general-practitioner records so that they can evaluate whether women who develop cervical cancer are properly referred to, and treated by, their general practitioners.

But if that is the reason that officials allege they need automatic access to general practitioner records, without women’s consent, then it simply does not stand up. Only about 200 women develop cervical cancer each year, and it would be extremely easy to get consent from those women to carry out an evaluation of their primary health-care records at the time they are diagnosed. I am absolutely convinced that the overwhelming majority of women—certainly those who are diagnosed with cervical cancer—would be only too happy to give consent at that stage.

The problem is that by doing it in this way—by saying that somehow, in order to access the records of 200 women, we need automatic access to the very personal and sensitive general-practitioner records of 1 million women—we will undermine confidence in the entire National Cervical-screening programme.

The member for the National Party said that if the Green Party whipped up fear about this bill, then that might result in women opting off. I can assure members that it will not be the Green Party that will whip up the fear. The fear is there. I have been contacted by women’s organisations and by women around New Zealand who, first of all, resent the fact that their personal health-care records will be able to be accessed in this way. They resent the fact that they will basically be given Hobson’s choice. If they want to be on the programme, they have to agree to surrender their right to informed consent. They have to allow automatic access to all their private health-care records, without their consent, or they have to opt off the programme and risk both their health and the efficacy of the whole nationwide screening programme. Pansy Wong was right when she said that is the key issue.

Why should women have to have Hobson’s choice? Why should they have to surrender personal consent in order to be on the programme? Officials told us that, allegedly, we needed these last-minute amendments to strengthen the cervical-screening programme. In my view, they will not strengthen the cervical-screening programme. They will erode confidence in it, and they will erode confidence in the doctor-patient relationship, which is founded on confidentiality and privacy. Once women realise that this confidentiality may not be maintained—that an unspecified number of evaluators can access their personal health-care records, and without their consent—it will undermine the whole confidence in the doctor-patient relationship.

I notice that the latest New Zealand Medical Association records point out that the code of ethics of the World Medical Association and the New Zealand Medical Association state that physicians must preserve absolute confidentiality in all they know about their patient, even after the patient has died.

I move, That the question be now put.