Health (Screening Programmes) Amendment Bill

I move, That the Health (Screening Programmes) Amendment Bill be now read a second time. I am very pleased to welcome this bill back to the House for its second reading. The purposes of this bill are to reduce the incidence and mortality of cervical cancer through the National Cervical-screening Programme and to facilitate the operation and evaluation of the programme. The bill also establishes clear objectives for the cervical-screening programme and will enable the evaluators to assess the performance and safety of the programme. The bill gives effect to four specific Gisborne cervical-screening inquiry recommendations.

The Health Committee has done an excellent job in considering the many thoughtful submissions that were made on this bill, as first introduced. I congratulate the members of the Health Committee. I know that many of the issues were not easy to resolve. I am happy to recommend to the House that it accepts the committee’s amendments subject to some minor amendments. One important change, as is apparent from the title of the bill, is that it now relates only to the National Cervical-screening Programme. Any future extensions—and they may well be appropriate—will be dealt with in other legislative context.

Let me remind the House why this Government introduced the bill. The National Cervical-screening Programme first became operational in 1990. It had considerable success in reducing cases of cervical cancer and in reducing deaths. Between 1990 and 1998 there is evidence showing a reduction of 22.5 percent and 46.3 percent, for cervical cancer registrations and deaths, respectively, for women of all ages. In 1999, however, it became apparent that there was under-reporting of cervical smear abnormalities in the Gisborne region. A committee of inquiry was established, and the report was delivered on 10 April 2001.

During the inquiry it became clear that there were many areas in operation of the screening programme that could be significantly improved. Over the last 3 years, initiatives in policy, training, and leadership have all contributed to improving the programme. Such changes include policy and quality standards for the programme and, in particular, laboratories; an increased national leadership role in clinical expertise; the establishment of a national leadership role; and the development of new resources and training initiatives. However, the select committee also identified a number of statutory barriers that prevent access to information. These barriers have obstructed the comprehensive evaluation of the programme. The bill will remove these barriers and set in place requirements for evaluation and more effective operation.

The bill will enable the Director-General of Health to appoint appropriate qualified persons to carry out evaluations of the programme. These evaluations will generally focus on systemic issues and range from general monitoring of cervical cancer incidence and mortality to specific audits of the safety and effectiveness of the programme. As recommended by the Gisborne inquiry, these evaluators will be either internal ministry employees or independent experts.

Information and confidentiality are a key focus of the bill. I know that the select committee has given thoughtful consideration to the question of how to protect information and how to ensure the screening programme works as well as it can to protect all women. The issues are difficult and that is reflected in the fact that the select committee has recommended changes in that area. Not all the members of the committee agreed with those changes. There was one member in opposition—the Green member.

I support the views of the majority of the committee and commend those to the House. I believe that most women in New Zealand would agree that achieving the best possible programme is the paramount objective. That means ensuring a full range of evaluating activities. This was emphasised during the Gisborne cervical-screening inquiry, and the report states the following: “The choice of the programme is stark. Effective evaluation cannot be guaranteed if women’s consent is required. If the right of an individual to consent to access to her non-protected information is to predominate, the programme cannot effectively evaluate its effectiveness, and therefore the safety of all women participants is at risk.”

The original version of the bill provided that evaluators would have access to information held only in hospitals and laboratories, and on the register itself. That is the form of the bill that I introduced, before it went to the Health Committee. That provision was very important to the evaluation, but, in the views of the majority of the select committee, it was not enough. The committee has now recommended that the evaluators have access to all health information, including general practitioner records, in keeping with recommendation 11.17 of the Gisborne screening inquiry. I add that experience from the current audit of invasive cervical cancer, and the expert opinion of Dr Euphemia McGoogan, emphasise the importance of including primary-care records in those evaluations. After all, it is in the primary-care setting that a woman usually has the majority of her contact with the National Cervical-screening Programme through screening tests.

Additional safeguards for privacy have also now been recommended by the select committee. Women who made submissions to the committee considered, and I agree, that it will be essential to know what participation on the programme involves. Therefore, the bill provides that when women are enrolled in the programme, they will be advised that their records may be used for evaluation purposes. Of course they have the option of opting off at that point, if, for any reason, aspects of the programme are unacceptable. New procedures to allow women to opt off the programme, compared with opting off individual results—as is the case under the current cervical-screening legislation—will ensure that women who have not developed cervical cancer have a choice to participate in the National Cervical-screening Programme.

There are also other safeguards in the bill to protect women’s health information. Evaluators can access information only for the purpose of evaluation and to the extent that the information is relevant to the evaluation. Personal matters—such as sexually transmitted infections, sexual abuse, and abortions—will be totally irrelevant to an evaluation or audit of any cervical-screening programme. Naturally, evaluators will be subjected to confidentiality requirements set out in the legislation, as well as their own professional and disciplinary standards.

All information accessed by evaluators must be returned. The director-general can also limit access to certain information, and regulations can be made to limit access to certain information. There are also provisions in the bill to ensure that women are made aware both by their smear taker and by the manager of the National Cervical-screening Programme how their health information will be used.

I commend this bill to the House. I believe that it will improve the health of women in New Zealand. It will ensure that women have trust in the programme, it will reduce the death rate from cervical cancer amongst women, and it will save women’s lives.

This has been an extremely good piece of work by the Health Committee. As I said, the bill as introduced did not include access to the records of general practitioners. It was after hearing submissions from people who appeared before the committee, and retaining Professor David Skegg as an adviser to the committee, that those recommendations have come back to the House in this way.

I commend the women who worked on this particular legislation. It was done in a very good way, and we are determined to have the best possible cervical-screening programme for the women of New Zealand. They deserve no less.

Thank you for the opportunity to speak on this very important and long-awaited Health (Screening Programmes) Amendment Bill. I am very conscious of the fact that this bill has emanated from one of the worst medical tragedies that has affected New Zealand—ever. I am referring, of course, to the findings and concerns in the 1989 report of the inquiry into the treatment of cervical cancer at National Women’s Hospital. Then to make matters worse, almost a decade later many of the same problems arose in Gisborne. The Gisborne inquiry arose from that initial inquiry, and a whole range of recommendations were put to the Minister to achieve. One of them was to ensure that we had a highly effective health-screening programme.

I was not a member of the Health Committee, which discussed the details of this bill. I am aware that great efforts were made by all members of the committee to try to get it right. However, I am concerned there are still problems with this bill, and at this stage of events, National will reserve its position until the Committee stage when we can see the details.

One of the things that did worry me tonight was why the bill had come up on the Order Paper so suddenly. Maybe it is purely a coincidence that it arrived on the Order Paper on the same day that a particularly worrying article by Sandra Coney appeared in the New Zealand Herald. It concerns the question of informed consent, which has been one of the main areas of contention with the bill, but which the select committee has done its very best to overcome. One of the points that I think is worth making is that it is important to look at the whole question of informed consent in the full context of cervical cancer and its morbidity and mortality. The rate of cervical cancer mortality has been coming down steadily over the last 60 to 70 years, even before cervical-screening programmes were instigated in a whole variety of countries, including Canada and the United Kingdom. The mortality rates were coming down, and only in recent decades has there been an upward increase in the rate of cervical cancer in younger women. That has been for a variety of reasons, probably to do with the spread of the human papilloma virus and the herpes simplex virus.

It is important to realise that we must not get too hung up on that relatively small area, when it comes to looking at the wider picture—that is, whether the need to ensure that general practitioner notes or primary-care notes are looked at by evaluators without informed consent will make a fundamental difference to the diminution of cervical cancer. It is very easy to get into this sort of debate without being aware that there are wider questions that should be answered first of all.

Included amongst those is the fact that it is vital to get the quality control mechanisms in place, because that was not the case in Gisborne. In fact, many people are not aware that Dr Bottrill was not a pathologist. He was actually grandfathered into his position without having ever come through a full course in pathology and cytology training. There is no doubt that, at the time, quality control mechanisms in terms of his laboratory were absolutely deficient. Over the last few years these mechanisms have improved considerably, and that is absolutely fundamental in terms of trying to get an optimal service and screening programme under way in New Zealand.

Quality control is necessary at a whole variety of levels within the screening programme including, of course, at the primary practitioner level—the smear taker’s level—because there are all sorts of confounding factors that can occur if smear taking is not done properly. So it is absolutely fundamental that there is an audit, a quality control, and a feedback mechanism to ensure that that very fundamental thing of smear taking is done properly, is done consistently, and that there is a report back where the accuracy is well over the 95 to 96 percent rate. Those things are all extremely important.

One of the biggest points of contention, of course, has been this question of informed consent. One of the reasons that National is reserving its position at this point is that we understand there may be some changes that will appear during the Committee stage, and we would like the opportunity to scrutinise those extremely carefully. I did want to make mention of one of the perspectives on cervical screening that has been put up by perhaps one of the most experienced clinicians and colposcopists in New Zealand, and that is Professor Ronald Jones. He co-authored the paper, with McIndoe, back in 1988 that led to the inquiry into the treatment of cervical cancer at National Women’s Hospital. He has great reservations regarding the structure of the cervical-screening programme, and I think it is important that his views are taken notice of.

He does say that it is worrying that Dr Karen Poutasi, the Director-General of Health, believes that all pieces of the screening programme are present, but still have to come together to create a cohesive picture. After 13 years and after all the problems with cervical cytology screening, he asks whether it is reasonable for the public to wait and hope a cohesive picture will emerge. He says that after 13 years he is unaware of a single, scientific paper to have emerged from the screening programme. That is an indictment on what has happened over the last 13 years. There have been terrible mistakes. There have been inquiries, yet no scientific papers have arisen despite the huge number of evaluations that have occurred over those 13 years.

He asked whether it would be possible for a system within the bureaucratic framework and culture of the Ministry of Health to survive long term. He says that the answer is almost certainly no. He says that a national laboratory and associated screening unit would need some independence similar to that of other countries. I think that those warnings should be taken note of. He ends by saying that sadly his guess is that the screening programme will continue to muddle along within the insular world of the ministry. Thus it will continue in relative ignorance of what it could and should achieve, be reluctant to accept criticism, and be propped up by health bureaucrats who see New Zealand as peculiarly different.

I end by saying that National intends to reserve its position on this bill until we have seen the details that will emerge in the second reading. We have grave concerns about the issue of informed consent.

I am pleased to be speaking on this bill, and I listened to the previous speaker with great interest and with some concern. The Health Committee worked almost unanimously on this bill because we very much wanted to have a very robust cervical-screening bill. The issues raised by the member reflect the fact, perhaps, that Dr Lynda Scott, who worked with us so well on this bill, along with other members in the Opposition—all of us really—wanted to have a more robust cervical-screening programme. However, the issues that they seem to be concerned about now pivot on the issue of informed consent. I believe that that is only operational detail, and it should not change the construct of this bill. I accept that we need to do some focused work on informed consent.

We want New Zealand to have confidence in a cervical-screening programme. The question was raised: “Why do we even have one?”. New Zealand women also need to have confidence to know, at the point when they have a cervical smear taken, or a gynaecological assessment, what will be done with their clinical record, and who will have access in evaluating the outcome of their cervical smear results. That is absolutely important. But the fundamental thing in any screening programme is that we need a large number of women to be involved with the opt-off provision.

We were urged to consider keeping the opt-off provision. We called the Minister back to the select committee because we were very much concerned about the access into primary health records. All of us wondered how we could have a robust evaluation of cervical screening that looked only at the hospital record. It was crazy to be looking at just cytology results in a hospital and not getting access to some critical information held on the primary record. All of us to a T agreed that women needed to be aware of what the evaluators would have access to in their file. We called the Minister back for that very reason. She assured us about the access into that primary file, which could be a midwifes’ file as well, not just the file of a general practitioner or an obstetrician and gynaecologist. When we were given that assurance we were more than happy to support this bill as it has been reported back today. Subsequent to that I do believe some clinicians were concerned about informed consent.

I believe we need to do some work on informed consent, but I think that does not need altering in the construct of this bill. Just remember that New Zealand women were urging for us to improve the rate of cervical cancer in this country. It was a recommendation of Euphemia McGoogan, supported by David Skegg, one of the very best experts in the country. I think the committee did a wonderful piece of work on this bill—all women, except Pita Paraone, who took our guidance on this. I believe that Sue Kedgley, even though she voted against it, accepted the need for a robust cervical-screening programme. That is our endeavour. With this bill we fulfil the recommendation of Euphemia McGoogan.

I urge us to take carefully the consideration of the bill as reported back, but some work needs to be done to give New Zealand women confidence that there will not be people crawling all over their primary clinical record.

I take a call in this debate tonight because this is an issue that I would like to know more about. I need to have some of my concerns allayed. There is not a member in the House who would disagree with the fact that what happened in Gisborne was a terrible, terrible occurrence, and when we look into that case we can see that there were a number of reasons why that case happened. I was surprised, for example, to hear that Dr Bottrill was not a pathologist in today’s terms. He was someone who was grandfathered into the role. It is clearly one of those medical tragedies that concerned all New Zealanders, and it has certainly been a huge story over the last couple of years, but I am concerned that this may be overkill for a problem that cannot necessarily be resolved by this legislation.

The concern I have is that women who have been on the screening programme for many, many years—I myself have been on the programme for the last 10 years—may be put in a position whereby they feel that they have to opt out because they do not want their medical files—the files held by their general practitioners—perused by people they do not know. I want to hear more from the Minister on that, and I will speak further with David Skegg in Dunedin, because I am unsure about the implications of allowing general practitioners’ files to be seen by people whom those women might not necessarily know. The relationship with the general practitioner is a very special one. I know, as many women in this House know, that sometimes we can have conversations with our general practitioner that might not have even with our own husband or partner. Women have very personal relationships with their general practitioners, and they talk about things that get noted down in the notes. It is not the same as talking to a doctor in a hospital. I think we all know that our secondary notes get looked at by all and sundry, and, therefore, we do not have the same sort of intimate relationship.

I am concerned that my rights to have privacy in my files can be legislated away by this bill. I understand from the Minister that the review of files will relate only to women who have developed cancer, and I hope that does not happen to me or to any other woman in this House. But it concerns me that researchers will be able to look through a file. One’s cervical records are not necessarily neatly in one section of the file. Researchers will have to flick though the whole thing. We should remember that a lot of women will have things on their files that they will not want even their own families, perhaps, to know—things like sexually transmitted diseases, a history of sexual abuse, terminations, depression, etc. I know that the Minister has said that those things will be irrelevant to the researchers when they look through files, but the issue is that the researchers will still see those things. A lot of women will be concerned that that sort of very private information will be accessed by people they do not know. They know the nurses in their local general practitioner’s practice, and they know the general practitioner, but they will not know the researcher who looks through their files. The researcher might be a highly regarded person, but the women will not necessarily know that, so there are worries.

Of course there will be confidentiality requirements, but we are a country of 4 million people. Fifty-two percent of us are women, and I am concerned that, in a small country, those sorts of things may be discussed. The researcher who goes through Helen Clark’s cervical screening results will probably remember a whole range of other things. I would like to think that those sorts of things will never be leaked to the public, but we have seen occasions on which that has happened. I want to have my concerns about those sorts of leaks allayed. We must be given the opportunity to say that if we do not want our files to be accessed—

💬 Mark Peck: You’re just making it up.

Here is a man speaking on this. I do not think he has ever gone to have a cervical screening test, so I do not think he is able to crack jokes and sit there smugly. He does not know what it is like to have the concept of somebody looking through his file, and looking at things that he might not have told even his wife. These are legitimate concerns. The whole point of parliamentary debate is to bring up these sorts of concerns so that they can be dealt with.

💬 Mark Peck: What about the facts?

Once again, Mark Peck sits over there and talks about an issue that is very personal to women. The cervical screening programme has saved many women’s lives. He does not know the first thing about the sorts of personal issues that we are talking about this evening, so he should keep his trap shut and not make any further comment.

💬 Mark Peck: This is turning into grubby politics.

The member says that this is turning into grubby politics. I say that these are very sensitive issues that a lot of general practitioners have raised with me locally. I wrote to every single general practitioner in the Otago area, and I asked them what they thought of the bill. Overwhelmingly, they came back to me and said that over their dead bodies would they let anybody come into their practices, fossick through files, or demand to see their files. The problem I have with this legislation is that a lot of women will opt out. If this legislation is not changed in any dramatic way, women like me, who have been on the programme for years and who have enjoyed the regular call-ups—from, I have to say, very dedicated people who try to track women down, come hell or high water, to get them in for the tests—will not have the benefit of being able to have those regular call-ups, because we will not want our files to be perused by people we do not know.

💬 Jill Pettis: Why not?

We are talking about extremely sensitive issues. If Jill Pettis had had four abortions, had been sexually abused, and had had deep depression—

💬 Jill Pettis: But I haven’t.

—would she want all and sundry to go through her file and see what was in it? No. That member says she has not had any of those things. There are some women in this country who have had those sorts of concerns and, quite rightly, they might not want a researcher—no matter how well regarded that person is—to be able to look in their files. That is why I will be doing a bit more work on this. A lot of women take their relationships with their general practitioners extremely seriously. A lot of women say things to their general practitioners that they would not say even to their own husbands or partners. That special relationship needs to be respected.

The cervical-screening programme has been a great programme, and over many years it has saved lives. I am concerned that the Minister and that party over there are presenting these changes as a salve for problems that relate to one unqualified person, and that they are pretending that more deaths will not occur from cervical cancer as a result of these changes. I do not think anybody believes that. I think that the solutions lie more in the area of quality control mechanisms, audit processes, and making sure that pathologists are the real McCoy. We are talking about legislating away women’s rights to have some privacy when it comes to their files. That party over there can suddenly pretend that it is politically correct to bring these things up, but I say that those members should think about the woman who has had a history of sexually transmitted diseases, a number of terminations, and depression. She might not have told her partner, and she does not want a person she does not know going through her file. She does not want someone marching into her general practitioner’s office and having access to something she holds to be deeply private.

💬 David Benson-Pope: Keep your word.

I find it remarkable that David Benson-Pope is calling out about something as deeply sensitive as cervical screening. [Interruption] When was the last time Mr Benson-Pope had a Pap smear? [Interruption]

The ASSISTANT SPEAKER (H V Ross Robertson): For goodness’ sake! It is like a schoolyard. I refer members to Speaker’s ruling 51/5. Both sides should have a look at it.

We are talking about something that is deeply personal. [Interruption] The Labour Party can make light of these sorts of concerns—

The ASSISTANT SPEAKER (H V Ross Robertson): I ask Mr Peck to desist. He has his first yellow card.

I am concerned that there will be a lot of women like me who will feel that they are in a position where they will have to opt out of the programme because they do not feel that their files should be accessed by anybody except their own general practitioner and the nurses from that general practitioner’s office. Rather than make light of those concerns, the members on the opposite side, particularly the males, should be sensitive about those issues and work hard to allay those concerns. They are not just my concerns. They are the concerns of a lot of New Zealand women.

On behalf of New Zealand First, I rise to speak on the Health (National Cervical Screening Programmes) Amendment Bill. This bill is of particular interest to New Zealand First, as we, like many other New Zealanders, have experience of it and know of people and their families who are suffering from and have suffered from this tragic cancer. The cervical-screening programme is a really great programme that has saved many lives. Cervical cancer is one of the more common cancers suffered by women. All the research indicates that early detection is paramount, and this programme does that.

New Zealand First believes that the operation of the National Cervical-screening Programme is absolutely essential for the health monitoring of all New Zealand women, and we recognise that we need a very highly effective screening programme. This legislation, with its monitoring and auditing of practices and results, should assist in the elimination of the under-reporting of cervical cancer and the misdiagnoses that have come to light. The bottom line is that we cannot afford to have misdiagnoses and under-reporting slipping through cracks in the system in the way that they have in the past. The quality control mechanisms need to be put in place, and this bill does that at all levels within the programme, which we are very happy about. We all know that the early detection of problems is the best way to treat conditions before cancer develops. A register to enhance screening programmes will be beneficial to New Zealand women.

💬 Katherine Rich: I raise a point of order, Mr Speaker. Mr Benson-Pope has been throwing a wide range of insults across the House. He called me despicable for the speech I have just delivered. As somebody who has actually suffered from cervical cancer, I take great offence at that. I would like him to stand, withdraw, and apologise, because my speech was delivered from the heart on a very sensitive issue.

The ASSISTANT SPEAKER (H V Ross Robertson): I thank the honourable member. The point is that members make disparaging remarks about each other all the time. It is a personal reflection that is out of order.

💬 Dr Wayne Mapp: I raise a point of order, Mr Speaker. Offence was taken, and it was in the nature of a personal reflection. I believe that my colleague’s statement indicated very clearly why it was so deeply felt, and I invite you to reflect on what you just said.

💬 David Benson-Pope: I am happy, if offence was taken, to withdraw and apologise.

The ASSISTANT SPEAKER (H V Ross Robertson): Thank you.

New Zealand First does have some concerns about the informed consent process and the privacy of information, as it was outlined in today’s New Zealand Herald article. The last thing we want to see is the bill compromising women’s privacy. We do not want to have a situation where women are opting off the programme because of fears about privacy issues and their primary health-care records. Unfortunately, I have already been approached by women who will be opting off this very programme because of the lack of a consent process, and I wonder how many other women will also follow that course of action. The bottom line is that the programme needs the support of New Zealand women if it is to succeed. I have also had inquiries over the last couple of days about the people who are already on the programme. The basis on which many people joined the programme was that access to their records held in other parts of the health system was not automatically granted. This raises the question as to whether the terms of the original contract that these women entered are still valid, or whether this bill starts a whole new regime.

Everyone deserves access to the best health-care, and access to this programme will occur only if people are satisfied with the programme. It is important for the well-being and the health of women that this bill proceeds—in reality every New Zealander is affected. Providing people with certainty about their health care and ensuring timely access to quality services is absolutely essential. We want the women of New Zealand to have the best possible screening programme. At this stage, New Zealand First supports this bill. However, we do have some reservations about the bill’s potential to undermine the privacy of personal health information.

The Green Party will be reserving its position on this bill. We will seek to amend the bill in a series of ways at the Committee stage, and we will see what happens to those amendments. We are delighted to hear that others in this House share the grave concerns that we have with this bill and, in particular, in regard to the confidentiality provisions. We hope the reason this bill has suddenly leapt on to the agenda in almost the dead of night is not that it contains highly controversial clauses that will potentially undermine the health privacy of more than a million New Zealand women. Certainly, women’s groups around the country are up in arms about these new provisions, which mean that the highly sensitive general practitioner records of up to a million women will be able to be accessed by an indeterminate number of researchers and evaluators—people, as Katherine Rich said, whom women do not know, will never meet, and will not even know the national health index number of. All this information can be accessed without women’s knowledge or consent, and for reasons that are still not clear to me and that remain a mystery to me, despite my persistent questioning on this issue in the Health Committee—and I will say more on that later.

This provision undermines the confidentiality, and therefore the basis of trust, of the general practitioner – patient relationship. Indeed, it undermines the Hippocratic oath—an oath dating back more than 4,000 years—in which general practitioners pledge to, amongst other things, protect the confidentiality of any information that is shared in a doctor’s surgery. It undermines that fundamental tenet and, therefore, that basis of trust.

It is interesting that it was never commented on by the Health Privacy Commissioner—and for very good reasons, no doubt, because it undermines the Health Information Privacy Code, the consumers patients’ code, and, indeed, the gains that were made by the Cartwright inquiry, which emphasised the need to respect patients’ autonomy and the right to informed consent.

The Health Information Privacy Code states: “Health information has long been recognised as being highly sensitive. Much medical and health information includes details of an individual’s body, lifestyle, behaviour, and practices, which are particularly intimate and may, if improperly disclosed, be misused.” That is why we have these stringent privacy provisions, the Health Information Privacy Code, to protect the confidentiality of sensitive medical records.

There is a very interesting issue in that some people have mentioned Sandra Coney’s article today in the New Zealand Herald. She raises an extraordinarily interesting legal issue. She points out that for the million women who are on the programme, the legal basis on which they joined this programme did not include access to their records held in other parts of the health system—that is, other than the cervical smears and so forth. She said that that is why the present auditor is seeking consent from these women.

She states: “If we can see joining the programme as a contract between women and the ministry, can the Government now change the rules without seeking the views of enrolled women as to whether they wish to continue on the new terms or opt out, or can the Government unilaterally change the terms of the contract, overriding women’s wishes as expressed during the earlier consultation for allegedly the greater public good?”. Certainly, during the consultation phase, there was overwhelming opposition to the provisions that are now contained in this bill. That is why consumer groups and women’s groups up and down the country are up in arms about this bill. There have been submissions from Women’s Health Action and various other groups that are outraged that this provision has suddenly been dropped into this bill. It was not there, and there was not the opportunity to make submissions during the select committee. It was just parachuted in at the last minute, and for no good reason that I can see. There is no guarantee that sensitive records on sexually transmitted diseases, infections, and sexual abuse, etc—information that is not necessary for the effective running of the programme—will be kept secret, because general practitioners are harassed. General practitioners have no time, and will not fiddle around putting black ink through bits of the information that they hand over, giving access only to certain bits. No, they will reluctantly hand over entire files.

It is interesting that half of the provisions of this bill require general practitioners to hand over the confidential, sensitive health-care records of women. There is no doubt that this is why all the general practitioners I spoke to—and the one I went to yesterday to have my cervical smear—are absolutely outraged at this bill, as are women’s groups around the country.

The Minister said that this bill will enhance trust, and Steve Chadwick said we must give women confidence in the screening programme, but I am afraid that this single provision will do the exact opposite. It will undermine trust in the programme, and, as others have said, many women will feel that they have no alternative but to opt off it. So it will achieve the exact opposite of its objective, which is to have a strong, robust programme involving all New Zealand women, and to have their confidence.

The Minister also said that all the information about sexually transmitted diseases, etc., is not relevant, but I would have thought it highly relevant. I would have thought that researchers would be fascinated to know about sexually transmitted diseases, given that we are led to believe that such diseases are among the main causes of cervical cancer. I would have thought they would be only too delighted to get their hands on that sort of information, so I do not believe those reassurances for one moment.

The Green Party does not believe that a convincing rationale has been given as to why the privacy of personal health information, and the approach that New Zealand has taken to privacy over many years, should be undermined in this way. The vast majority of women have consented to be on the screening programme, and we believe they will continue to do so, provided that the confidentiality and security of sensitive health information is assured. Given the high percentage of women who participate on the basis of informed consent, we simply do not believe the claims that insufficient numbers of women would agree to participate if their explicit consent were required. We believe that far from strengthening the programme, there is a real risk that the provision will result in a backlash against it, and a reduction in the participation rate, as significant numbers of women opt out because they do not want their very sensitive, very personal health information to be accessed by an unspecified number of evaluators.

For all these reasons, we believe that informed consent should always be sought before personal health records are accessed. The main purpose of accessing the records is to evaluate whether women who develop cancer, or early signs of cancer, have been treated properly. This was the only reason we were given as to why researchers would need the primary health-care records of up to a million women. Only about 160 women develop cervical cancer each year, so it would be relatively easy to obtain consent from those women at the time they are diagnosed with cervical, or pre-cervical, cancer.

We do not believe that there is any rationale for the provision. I asked Professor Skegg and many other people what they wanted to do with the primary health-care records of 1 million women—that is what this bill will give them, and we are now told that they do not want them, but this gives them access—and Professor Skegg said that researchers would need them only occasionally. If they need them only occasionally, then let us allow women to give their informed consent. I am convinced that if women can give their consent, then they will do so, but if there is no provision for them to give their consent, and if their primary health-care records can be obtained without their knowledge or consent, then there is a risk—as Sandra Coney and others up and down the land have said—of a very real backlash.

I am delighted that the Green Party, having been the only party that had grave reservations about this bill, is now being joined by other parties, and that women around the country are making their voices heard and that some MPs are actually listening to them.

The aim of this bill, the Government says, is to assist the operation and evaluation of the national cervical-screening programme. Indeed, as we have heard, the committee did work very constructively together and was united in its will to get this legislation right. We have heard various concerns tonight, and in fact ACT New Zealand still does have some concerns about the bill, although they are slightly different in nature, regarding informed consent, from those of the previous speaker.

It is important that this bill is robust so that we do have a robust national cervical-screening programme. Dr Euphemia McGoogan’s recommendations, of course, are very instructive, and the bill has stemmed from many of those recommendations. In fact, I think that at select committee level we have managed to address many of those, but there are still some I do have concerns with, and for that reason ACT will be reserving its position on this. We are very keen to hear the amendments the Minister has spoken about, and until we hear what those are and the specifics that relate to them, we will still be reserving our position.

I do agree with the National speaker, Paul Hutchison, who said that there are still problems, and I have similar concerns, which I will go on to outline. But first, when I was researching for this debate, I looked back on my first reading speech, and in fact some of the concerns I had then still do exist. I said that the current programme was set up because of a need to be seen doing something about cervical cancer. But international guidelines were ignored, experts within New Zealand were not consulted, and, most important, there was no adequate system of quality control. My concern is that the bill still does not address these concerns adequately.

These failings were brought to attention with the report from the Gisborne cervical-screening inquiry and the most recent inquiry. The current bill is a response to the Gisborne inquiry but it risks creating another political response to a medical problem, and again I say that that is still a valid worry. My first problem with this bill is that the ministry is still given the wide range of powers that it has at the moment with the national cervical-screening programme. The national cervical-screening programme provided by the ministry is going to be setting up the programme. It is going to be administering the programme, and it is still going to be responsible for auditing and evaluating the programme.

There is a conflict of interest when one body does all those things. I said in my first reading speech that there are other well-qualified bodies around the country that could participate in this programme, and some that spring to mind are some of the university departments. We were very fortunate to have Professor David Skegg as our adviser. He in fact was brought to the committee at my suggestion, and he gave us what I felt was very good advice.

The second major concern I have is that one cannot take almost 1 million women directly from an opt-on programme, on to an opt-off programme, without their informed consent. [Interruption] I know it has. One cannot take those women though from the programme we have at the moment, change the rules, and still expect them to go directly on to the new regime without their express consent. That is another reason we will be reserving our position on this. [Interruption] If the Minister would like a call, perhaps she should take another one.

The ASSISTANT SPEAKER (H V Ross Robertson): I refer members on my right to Speaker’s ruling 51/5(3), which states that running commentaries are out of order. If members wish to take a call they can do so, next time.

I refer to the issues of informed consent that we have had. I do not share personally the same concerns that some of the other speakers have about access to primary-care records. I was involved with medical research for 10 years. Auditing and evaluating are done in a very robust way. In fact, the auditors and evaluators have a very specific job to do. They are not there to scour through people’s primary records, looking for every little embarrassing situation that may have arisen in somebody’s life. They do not have the time, for example. [Interruption] I agree with the people on the Labour side, so it would be wise for them to be quiet with the sarcastic comments, or else I might change my mind.

💬 Hon Annette King: They are good comments, based on evidence.

That is right, and I do believe in scientifically based evidence. The evaluators are not there to look for every little problem that exists, so that is not my major concern. My major concern is that women are being changed to a different type of programme, without their informed consent. Women need to have confidence in this bill, and confidence in the cervical-screening programme. My concern is that the bill as it exists at the moment does not provide women with this confidence. My major concern is whether the Ministry of Health, which I do not have confidence in to run and administer and evaluate this programme, is the right body to be doing this.

As I say, it is very important to have this confidence from women to participate. We know that in public health circles it is imperative to have the majority of women participating in this programme for it to be truly effective. Part of the reason that the death rate from cervical cancer has decreased over the past decade is probably due to the fact that we have had a national cervical-screening programme. I would like it to be more effective than it has proven to be, with the Gisborne inquiry findings. I feel that the best way of achieving this is for there to be more transparency within the programme. By that, I mean that the Ministry of Health must not be involved at every step; or at the very least, it must be a contestable process so that other bodies that we know exist within New Zealand and are well qualified to participate in a cervical-screening programme, should be given the opportunity to do so. ACT New Zealand certainly would not have difficulty with this concept. In fact, we would encourage it.

I come back to the fact that women must have confidence in this bill. I look forward to hearing the amendments that the Minister is putting forward. Certainly, I would like to be able to be in a position to support this bill, but unless some of the concerns that I have, and that the National Party has expressed—and in fact some of the informed consent concerns that the Green Party has expressed, with New Zealand First’s support too—can be addressed, I am afraid we will not be able to support the bill.

Having said that, the expressions of support given at the select committee still stand. Certainly, I would like to see, for the good of New Zealand women, support from the whole House. I must say that if the amendments can address the concerns that we have, then ACT New Zealand will be in a position to support the bill, but at the moment that is not our position.

I raise a point of order, Mr Speaker. I want to now raise the point I have already raised with you privately. It refers to how it is that in this debate United Future is getting the eighth call rather than the seventh. You have explained to me that that has happened because when New Zealand First failed to take the call in the order we had agreed after much consultation between all the parties, you then gave that call to the National Party, and reverted later to New Zealand First and went back to the speaking order.

I want to suggest to you that that is rather a perverse outcome. It means that a party is quite innocent—and in this case, it is our own party, which did not fail to take its call at the allotted time, but we have been degraded from seventh to eighth. I think the alternative call you might have made, and I would like you to consider this, would have been to go to the Green Party—in which case we would have gone from seventh up to sixth in the speaking order.

I guess the point I want you to consider is what sort of precedent we are establishing here, because it is important for the future. I think we need to think about the perversity of what has happened tonight, and whether that should become the norm for the future. I would like you to consider that matter.

I thank the member for drawing this matter to my attention. The reality is, though, that the National Party was the only party seeking the call at that stage, and therefore it had the right to be called. The fact that New Zealand First failed to call is negligible and does not really matter. The call was given to the person who took it, and I ruled accordingly. I now call Judy Turner.

I raise a point of order, Mr Speaker.

The ASSISTANT SPEAKER (H V Ross Robertson): I have already ruled on the point of order. Is this another point of order?

I want to speak further to a matter that I raised, which I do not believe you have addressed in your ruling.

The ASSISTANT SPEAKER (H V Ross Robertson): In that case, the member needs to raise a further point of order.

I raise a new point of order, Mr Speaker. I do not dispute what you have just said about the National Party being the only party seeking the call, but I believe that thereafter you could have gone to the Green Party, so that we go back to the sequence of calls agreed between the parties at the Business Committee—after much deliberation and discussion, I might add. I would like you to reflect on whether you could have then gone back to the Green Party to restore the order to that which had been agreed by the House. As I pointed out, it is a perverse outcome that we get dropped down one stage when we are just an innocent party to the whole thing. I do not feel that you have actually reflected on that point.

I thank the member. Can I just say that the only person calling at that time was the honourable member Katherine Rich. Therefore, she got the call. The Speaker can only give the call to a member who calls at that time. There the matter rests.

I stand on behalf of United Future to speak to the second reading of the national cervical-screening programmes legislation. Cervical cancer is one of the most preventable of all cancers. Early detection of abnormal cell changes can result in effective treatment, and in New Zealand it is estimated that between 220 and 240 women develop cancer of the cervix each year, and that 70 to 80 die from it. That is quite a high rate compared with other OECD countries. In fact, Professor Skegg told us that we were the sixth highest of the OECD countries in the incidence of death from cervical cancer.

The cervical smear test is a screening test, not a diagnostic test. If abnormalities are detected, then further tests are needed to get more accurate diagnoses. False negatives and false positives are not uncommon, and that is why it is vital, if this screening programme is to be successful for women, that women are diligent in having regular smears, and that the screening programme is stringently monitored. For this programme to be effective, it requires New Zealand women to be committed to the common good. If a particular pathologist or smear-tester is not competent, or a laboratory is not protecting slides properly, or follow-up is inconsistent in some way, then those failures will only be picked up by thoroughly examining all their work, not just one or two results.

The Health Committee worked extremely responsibly on this issue, and I would like to commend Steve Chadwick for the way she chaired this process, and also the committee members, who, in general, did not allow ideology to get in the way of women’s safety. The decision therefore to include the accessing of the appropriate primary health information of programme participants by evaluators is essential. The question I ask myself is whether I am happy for programme evaluators to double, triple, or quadruple-check my smear results, if it will help save somebody else’s life—because that is what the issue is about. The answer is yes, I am.

Debate interrupted.

The House adjourned at 10 p.m.