Goodhew Jo: Human Tissue Bill — Second Reading 
Goodhew Jo: Human Tissue Bill — Second Reading 
[Volume:643;Page:12624] 
JO GOODHEW (National—Aoraki) 
: 
 I rise to speak on the Human Tissue Bill. This is a Government bill and it replaces the Human Tissue Act 1964. I along with my National colleagues will be supporting this bill. As one would expect there has since 1964 been great progress in science and technology. That progress has necessitated in many ways this bill to bring the use of human tissue and the way it is dealt with into a more modern age. 
This is a complicated bill. It regulates the collection and use of tissues from dead human bodies but it also sets up a framework for informed consent for human tissue use. But there is much more to it as well. It sets up regulations for trading in tissue—for exporting and importing tissue—and for the use of tissues for non-therapeutic purposes. Some people will wonder what non-therapeutic purposes are. Well they include audit and research education and anatomical examination. The bill also addresses the need for informed consent from donors for the analysis of tissue collected from living people other than in the course of health-care procedures and it safeguards the use of tissues collected while the donor was alive after the donor’s death. 
This bill is a balancing act between the stakeholders associated with human tissue. Who are those stakeholders? Firstly and most important there is the person from whom the tissue has originated. We in National believe that that person has primacy. But in the Health Committee we wrestled with decisions about who should decide on the use of tissue from a person who is no longer living. 
With regard to my own body—and I speak entirely for myself—it is my belief that my responsibility is to take whatever steps I can to ensure that my family is aware of my wishes for organ donation and for my tissues to be of the maximum possible use to those people who have the use of them after I die. In order to make that happen I have talked quite extensively with my family. I have explained to them the sorts of things—the unspeakable traumas really—suffered by families who lose a loved one to a sudden unexpected death. The reason I have talked to them about that is that I want them to understand that although I know how traumatic it is for those loved ones I still wish them to remember it is my wish that my organs be used for donation if at all possible. That is my wish. 
Other stakeholders in that important decision-making process are the health professionals that are involved. As a former health professional I know the burden of comforting the grief-stricken relatives of someone who has died suddenly; I know that personally. Those health professionals seek to care for those who are left behind. We were told in the select committee that that motivation sometimes means health professionals will go against the wish of the deceased person and will in fact act on the wishes of the family who do not wish organ donation to take place—they will respect those family members who are suffering so much that they just cannot countenance the idea of organ donation happening and they will not respect the wishes of the person who has died. I guess that is why I have put so much effort into talking to my family. 
Researchers and New Zealanders whose future health may depend on aspects of this legislation are also stakeholders. Often constituents will come into my office to tell a tale of woe. Sometimes they are eager for someone to take responsibility or to redress the situation but often they are big-hearted enough to wish that whatever their misfortune is it will not be suffered by others. Often that will be the motivation for consenting to the use of tissue for research both now and in the future. 
Concerns were raised during the submission process that aspects of the bill would endanger the use of private cord blood banks. There is an Auckland-based private cord blood bank that we understand was established in 2003 to enable parents to bank their newborn baby’s cord blood in order to provide a source of stem cells for future medical use. The director of that cord blood bank Rosenbaum was concerned that this particular bill may put all that under threat. In fact most of the issue was around the fact that money was paid to collect the cord blood and to store it. There were also some concerns from the New Zealand Blood Service about the recovery of costs for storage and collection. That issue has been addressed within this bill; that will not be illegal. We hope the submitters are reassured about that. 
International researchers are also stakeholders. They were concerned that the purchase of tissue arrays currently advertised in international scientific journals and catalogues and often available long after the death of the donor may become illegal. That was mainly around the advertising for sale of that particular tissue. An exemption will amend the bill to allow that to be lawful. It is very important that we do not stifle science and research. 
The most important issue arising from the bill also came up. That issue was around the consent of the person whose tissue would be used and who could give that consent. That issue has gained in stature over the last couple of decades in fact. A number of sorry episodes in New Zealand’s history have fuelled that particular issue and they include the National Women’s Hospital’s unfortunate experiment. What did we learn from the tragic deaths of women who were unaware that they were part of that experiment? We learnt that people have the right to understand what is happening to them when any health-care procedure is carried out. So if a tissue sample is taken we have the right to know what it will be used for. Most people as I have already mentioned will be more than happy if for example that tissue will be used to better other people’s lives in the future but also if the tissue is used for diagnosis or quality control analysis or training. Mostly people just want to know that their own health will be enhanced and that their privacy will be protected. That is of course very important because if someone has a very rare disease he or she will not want to think that the use of his or her tissue in the future and the reporting of that use will identify that person. 
 I now want to spend a moment or two talking about a trust that I launched in Timaru in March this year. The South Canterbury Organ Transplant Trust was launched to administer some funding that was left over from the Brent Shears Trust. Brent Shears received a transplant and a lot of community money assisted with that and there was money that the South Canterbury Kidney Support Group actually applied for to use in the organ transplant trust. The reason the trust was put together was so that the families of organ transplant recipients could actually have some of their expenses paid for because those expenses do cause quite a considerable strain on the recipient’s family. Although I was able to launch that trust it was also wonderful on the same day to be able to present Gift of Life certificates to live donors who had given kidneys to family members. 
That brings me to another point—one of the points that was repeatedly debated with regard to this bill and also the bill of my colleague Dr Jackie Blue the Human Tissue (Organ Donation) Amendment Bill. That point was the shortage of organ donations which is a serious concern to New Zealanders. The publicity around both of these bills—the publicity engendered by the bills—will go part-way towards raising awareness but I must say there is a long way to go. 
This bill as has been mentioned by other members in the House—has flow charts and those flow charts will be very very essential in order for people to understand the process of decision making within this bill. We did in the select committee ask the officials to put those flow charts together. They are still not simple but they are an improvement to the bill. 
Also part and parcel of this bill is the ability for equal weight to be given to informed consent and informed objection. I truly believe that that is an improvement to the bill. It underlines my earlier statements about the importance of awareness of what giving consent and also withholding consent mean. 
National is supporting this bill and although we have a sense of disappointment that there is a facility for an organ donation register in the future but no immediate move to establish one the bill does move our laws forward to acknowledge a more modern era and the need to bring our laws into line with technology.