Blue Jackie: Human Tissue Bill — Second Reading 
Blue Jackie: Human Tissue Bill — Second Reading 
[Volume:643;Page:12609] 
Dr JACKIE BLUE (National) 
: 
 The National Party will be supporting the second reading of the Government’s Human Tissue Bill although we remain concerned that an organ and tissue donor register is on hold for the moment. 
First I would like to make some general comments about the bill. The Human Tissue Bill provides a consent framework within which the individual’s wishes if they meet the definition of informed consent are given primacy. The National Party absolutely supports this intention. This is the basis to the Code of Health and Disability Services Consumers’ Rights which was launched in 1996 by former National MP the Hon Katherine O’Regan when she was Associate Minister of Health. I would like to take the opportunity to wish Katherine a speedy recovery. 
The establishment of the code of rights came out of the recommendations of the cervical cancer inquiry in 1988 which was a turning point in our health system. Specifically the code talks about an individual’s right to be fully informed and the right to make an informed choice and to give informed consent. The difference is that although the Human Tissue Bill predominantly regulates the collection of tissue from dead human bodies the code is about living people. None the less the basic principle that an individual’s informed consent has primacy in both this bill and the code is absolutely appropriate. 
This bill replaces the Human Tissue Act 1964. It is a complex bill and raises many complex issues. It has raised the issue of the cultural context of informed consent. Researchers were very concerned about how the bill would affect established cell lines where the original donor was untraceable. They were concerned that if established cell lines were included research would grind to a halt. We also heard from a private company that collects cord blood from newborn babies to store that it could go out of business if it paid a fee for the blood to be collected. These and other issues had to be considered. 
Apart from our concerns about an organ donor register the National Party was reassured that the Human Tissue Bill in its latest form had no loopholes or unforeseen unintended consequences. It regulates the collection and use of tissue primarily from deceased people for non-therapeutic use such as for education research and audit and the use of cadavers in medical schools. It regulates trading in tissue—export and import. It regulates schools of anatomy closes gaps in current regulations for the use of tissue for living people and allows for the provision of an opt-on organ donation register. 
The Government’s Human Tissue Bill was heard alongside my member’s bill the Human Tissue (Organ Donation) Amendment Bill. Andy Tookey was the driving force behind my member’s bill. Andy has been a tireless campaigner highlighting the issue of falling organ donation rates and the need for a register. The member’s bill provided details on how an organ donation register could work. The way the Government bill was drafted was that if during the Health Committee process it was clear that the organ donation register was needed then the member’s bill could easily have been cut and pasted into the Government bill. Sadly this was not to be. Even now it seems incomprehensible that this will not happen. 
There have been two previous Health Committee reports—in 2002 and 2003—both calling for the establishment of an organ donor register. The Labour Party as part of its 2005 election manifesto said it would establish an organ donor register. We have seen our organ donor rates drop from the high 30s in 2001-04 to 29 in 2005 and to just 25 in 2006. We face the situation whereby the threshold to go on a waiting list has been lowered which means there are more and more people waiting for a transplant. Organ transplantation is now an option for more illnesses. We face an obesity and diabetes epidemic. Some of the complications of diabetes are end-stage renal failure chronic ill-health and a life dependent on dialysis. There are reports of around 200000 people being infected with hepatitis B or C. Liver failure is a complication of these illnesses and those suffering from liver failure face certain death without a liver transplant. 
It seems inconceivable that faced with such huge need and demand for organs the backing of the Government and two previous Health Committee reports we should not be proceeding with an organ donor register immediately. However we were told there was no international evidence for a register. This is despite a steady stream of media reports I have seen of countries turning to legislation to improve donor rates establishing new organ donor registers or going from intent registers to consent registers. These have all been done as a response to falling organ donor rates in the face of increasing need. In January 2006 the Australian Capital Territory issued a press release stating that their impressive increase in organ donations confirmed the importance of registering with the Australian programme. In September 2006 the UK Human Tissue Act came into effect to ensure that if a person registers his or her wish to donate organs then that takes precedence over objections. In April 2007 Texans expanded their organ register into an online register. In the same month a Canadian media report called for the establishment of a national database and network in the face of falling donations. In July 2007 there was a media report from Switzerland that they were establishing an organ donor register. In August 2007 Ontario reported that they would be establishing a register to replace what they called a “completely ineffective donor card system”. 
I would like to make some comments about donor card systems because without an organ donor register in essence that is what New Zealanders will have to depend on. In other words without an organ donor register New Zealanders will have no other option but to carry around advanced directives or have instructions in their will. The Ontario experience is that when there is a sudden illness or accident the last thing medical staff and family members worry about is their purses and wallets which often get locked up. There are numerous examples of countries or states in the USA taking up registers yet New Zealand is backing off. Where does that leave New Zealanders? The answer is with not much at all. We are in a watch-and-wait situation. 
There is provision in the Government’s Human Tissue Bill for a future Government to bring in an organ donor register by regulation if one is deemed necessary in the future. We were told that a public information campaign would be crucial to an overall strategy to increase organ donor rates but there was no information or detail about how a public relations campaign might work. Without a register the call to action of a public information programme will be diluted and lost. A register would provide a crucial focus to a public relations campaign. A register would provide an informed consent process which is fundamental to this bill. The register is the key. We have no register and no evidence of a public information campaign and we are facing huge need and demand for organs. The focus will now be on Organ Donation New Zealand which is the publicly funded body for retrieving organs for donation to prove that a register will not be needed in the future and that it will be able to lift our organ donor rates. My very great concern is that it will not be able to do it alone and that we will be delaying the inevitable and wasting precious time. In summary National will be supporting the second reading of the Human Tissue Bill but we remain very concerned that an organ donor register is not forthcoming at the present time.