Kedgley Sue: Health (Screening Programmes) Amendment Bill — Second Reading 
Kedgley Sue: Health (Screening Programmes) Amendment Bill — Second Reading 
[Volume:613;Page:9911] 
SUE KEDGLEY (Green) 
: 
 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 4000 years—in which general practitioners pledge to amongst other thingsprotect 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.