Kedgley Sue: Health (National Cervical Screening Programme) Amendment Bill — Third Reading 
Kedgley Sue: Health (National Cervical Screening Programme) Amendment Bill — Third Reading 
[Volume:615;Page:11441] 
SUE KEDGLEY (Green) 
: 
 When this bill first came to the House members of the Green Party enthusiastically supported it because we believed it would strengthen the National Cervical Screening Programme—a programme that has been dogged with controversy in recent years and was in our view much in need of strengthening. 
The bill as it was originally drafted struck a good balance we believed between the need to obtain sufficient information to run an effective national screening programme while at the same time protecting women’s sensitive personal medical and general practitioner records. It allowed evaluators automatic access to all laboratory records to hospital records and to all the information that is on the screening register but protected the vital general practitioner records. But sadly in the amended version of this bill which was passed last week that carefully worked out balance in our view was abandoned and we now have a bill that will allow automatic access to the general practitioner and personal health-care records of all women enrolled on the programme and in so doing will remove the confidentiality of the sensitive health-care records of more than 1 million New Zealand women. 
The astonishing thing is that when the officials were originally drawing up the bill they very sensibly consulted women’s groups around the country. They proposed a provision allowing evaluators access to women’s personal records. But there was such an outcry such overwhelming opposition from women’s groups that that provision was dropped and Cabinet sensibly dropped the provision and allowed automatic access only to hospital records laboratory records and so forth. Given the overwhelming opposition by women’s groups to that provision I am amazed that the majority of members of the committee voted to reinstate those controversial clauses thereby presenting women in New Zealand with a cruel Hobson’s choice. Either they stay on what is otherwise a good and useful programme surrender their right to informed consent and allow automatic access to their personal health-care records without their knowledge or explicit consent or they opt off the programme and risk their own health and the efficacy of the programme as a whole. This is a cruel Hobson’s choice that women will be forced to confront. Sadly given the sensitivity of many women to their personal health-care records we can expect that many women will opt off the register and if that happens it will weaken the programme. It will not strengthen the programme—which is what this bill set out to do. 
The Green Party’s view is that consent should always be sought before a person’s health care information records can be accessed. It has long been recognised that medical records contain highly sensitive and intimate information. They contain our medical history and therefore need special protection. That is why we have a health privacy code—a code that says amongst other things that much medical and health information includes details of an individual’s body lifestyle behaviour and practices that are particularly intimate and may if improperly disclosed be misused. That is why we have the stringent privacy provisions in the Health Information Privacy Code. Unfortunately the provisions of this bill will set aside some of these provisions and with it I fear the approach to privacy that New Zealand has taken for some time. 
If one looks at the bill one will see that whole sections are written in such a way that they will override and get around the Health Information Privacy Code and require doctors to provide access to general practitioner records. The requirement that doctors do this will in our view adversely affect the doctor-patient relationship. The knowledge that a doctor may be required to allow private patient records to be copied without a woman’s consent or knowledge will undermine the confidentiality and trust that is fundamental to the doctor-patient relationship. For more than 4000 years doctors have had to pledge that they will protect the confidentiality of any information that is shared in a doctor’s surgery. We have a newsletter from the New Zealand Medical Association pointing out that the code of ethics of the World Medical Association and the New Zealand Medical Association state that doctors must preserve absolute confidentiality in all that they know about their patients even after the patient has died. 
The Minister mentioned the 1988 Cartwright report which I have here which recommended the establishment of a cancer registry—but that whole report emphasises the need to respect patient autonomy and uphold the right to informed consent. One of the specific recommendations states: “If such a register is set up it must be maintained under the strictest rules of confidentiality and privacy.” Unfortunately as a result of this bill we now have a register that is no longer operating under the strictest rules of confidentiality and privacy. 
The astonishing thing is that officials have not in my view put up a rationale as to why these radical changes that will set aside the privacy of personal health information are required. As I have said they already have access to the laboratory records all the key information the register that is needed to allow evaluators to evaluate the quality of smear taking and reading timely access and so on. Why then do we need this access to women’s general practitioner records? Officials have argued that that will be so they can evaluate whether women who develop cervical cancer were properly referred and treated by their general practitioners. But if that is so and that is a sensible reason to look at general practitioner records that does not justify the automatic access they are seeking to the general practitioner records of more than one million women because as Steve Chadwick has said only about 170 women develop cervical cancer each year and it would be relatively easy to obtain the consent of those women to carry out an evaluation of their primary records at that time when they are diagnosed. I am absolutely confident that the overwhelming majority of women would be only too happy to give consent at that stage. 
Other MPs have said that there is no need to worry because the evaluators will be able to automatically access women’s personal health information only if it is relevant to their research and evaluations and that evaluators would not be interested in trawling through all the other records of patients’ personal information. But the problem is that the fine print of the bill allows evaluators to access a broad range of cervical health information—anything that they decide is necessary to perform their functions. Given that sexually transmitted diseases are thought to be one of the main reasons one of the risk factors in developing cervical cancer evaluators could easily argue that the records of women’s sexually transmitted diseases and other things such as previous pregnancies were relevant for their research. The other thing is that they have suddenly said that doctors may—may—have oversight when the evaluators are looking through women’s records. They may—but then again they may not. I do not know what other members think but I know that most doctors are so busy that they will not have time to oversee this. Furthermore general practitioner records are not conveniently organised around disease status so evaluators may need to look through an entire record. But most important of all is that women do not want to hand over to doctors the responsibility for deciding what confidential health-care information should be handed over to authorities. They want to make that decision themselves with their consent. So frankly the addition that they “may” have some oversight by doctors will not I am afraid reassure women who are concerned about protecting their private and confidential information. 
Finally the Minister said that letters would be written and that women can give their informed consent. The Minister actually said: “They will be advised of the programme.” I have never had it officially confirmed that letters will be sent to women but certainly those letters will not require women to give their consent. All the letters will do is inform them of the programme. If a consent form was attached to the letters then we would be able to talk about as the Minister said giving consent. But frankly that is not the case. I understand there are problems about how this will be contracted out and how women’s information will be obtained by contracted-out people.