Dr JACKIE BLUE (National)
: I am delighted to stand to talk to Part 1 of the Human Tissue Bill. It is a bill that the National Party is supporting all the way through, although we have some concerns about the fact that an organ donor register will not be implemented immediately and there is provision for one only under a future Government.
The Human Tissue Bill replaces the Human Tissue Act 1964. It regulates the collection and use of tissue primarily from deceased people, and also covers the use of tissue for non-therapeutic uses, such as education, research, audit, the use of cadavers in medical schools, and so on. It also regulates the trading in tissue, regulates the schools of anatomy, and closes gaps in the current regulations for the use of tissue in living people. As I mentioned, it allows for the provision of an opt-on organ donor register, with the details to be determined by a future Government.
The Human Tissue Bill provides a consent framework in which the individual’s wishes are given primacy, and the definition of “informed consent” is included in Part 1. The National Party certainly supports this intention. In fact, it is the basis to the Code of Health and Disability Consumers’ Rights, which was launched in 1996. Certainly, the code of rights came out of a recommendation from the cervical cancer inquiry in 1988, which really was a turning point in the health system. So this bill certainly has a very good tradition. It goes right back to that cervical cancer inquiry. Specifically, the code talks about the individual’s right to be fully informed of the right to make an informed choice and give informed consent. The difference with the Human Tissue Bill is that it
predominantly regulates the collection of tissue from dead human bodies, and the code is about living people.
It does raise a number of complex issues. The purpose of this bill has been defined, and it covers principles such as taking into account the autonomy and dignity of the individual, and the cultural and spiritual needs, values, and beliefs of the immediate family, as well as the cultural, ethical, and spiritual implications of the collection or use of human tissue. Generally, it does not involve the requirement or acceptance, or the offering or provision, of financial consideration. That means we are not allowed to pay for services.
The Health Committee heard from a company called
CordBank in Auckland, which is a private company that collects cord blood from the umbilical cords of newborn babies. The purpose is that there are a lot of rich stem cells in cord blood. Stem cells are the precursors of all living cells. The parents of these newborn babies elect to have the cord blood collected and stored in case their child might develop some blood cancer abnormality in the future. Obviously, it is not a widespread practice at the moment, though I understand from a ministerial letter that there could be a publicly funded cord bank available.
CordBank is a private cord bank, and of course the midwives who take the blood are paid for the service—there is a fee, a transaction. Under this bill, that would not be allowed.
CordBank was very concerned that it would go to the wall and have to close its business. Fortunately, everyone on the committee could see the company’s point, and provision was made for this particular organisation.
Clause 4 gives an overview of the Act. It talks about the collection of non - health care tissue. This did cause a little bit of concern and confusion as to what a non - health care tissue or procedure was. The officials tried to give us some examples, but it was a little bit confusing. Essentially, from what I took of it, a non - health care tissue was like a hair sample taken through not a health care procedure but perhaps a haircut. If later on that piece of hair was used for donor analysis or genetic testing, it would come under this Act.
We had a number of definitions that we had to get to grips with, but once they were explained and we had some flow chart diagrams they were quite simple. There was a definition of “immediate family”, which is members of the family or
whānau who were in a close relationship with the individual and had, in accordance with the customs or traditions of that community, responsibility for the individual’s welfare. Then we had the definition of “close available relative”, which was in relation to a person who was over the age of 16 at the time of death. There were different levels of “close available relative”. At one level we had the spouse or civil union partner—
