Human Tissue (Organ Donation) Amendment Bill Tariana Turia, Co-leader, Maori Party Wednesday 3 May 2006; 9.20pm

It is not unusual for us to receive calls regarding the death of family members.

Two days ago I got a call that a whanaunga of mine, not yet in her sixties, with a history of diabetes, had passed away.

Our people are over-represented in cases of diabetic renal failure, with rates of up to ten times those of non-Maori.

One of the greatest tragedies of our time is that the rate of organ donation to prolong the life of so many of our whanaunga is low.

A statistical analysis by the National Organ Donor Co-ordination Office showed that only six Maori families consented to organ donation between 1988 and 1996 (from a total of 290 families).

Given the prevalence of kidney disease in our population, and potential issues around tissue matching, this low rate of organ donation seriously affects Maori people. We are very aware that the current demand for tissue-compatible Maori organs exceeds current supply.

This is a huge issue for our communities - and it is a dialogue that the Maori Party very much wants to continue amongst our people.

We welcome and will seek further opportunity for meaningful debate around how health and other professionals deal with removal, retention, and return of body parts and organ donation.

We mihi to Jackie Blue for her courage, and to Andy Tookey for their initiative in trying to address the donor shortage problem in New Zealand.

But the Bill being discussed today goes far further than many of our people are willing to consider. Many Mäori are uncomfortable with organ donation following death. The tüpäpaku is tapu. To interfere with it in any way is abhorrent to our culture.

Human Tissue Organ Donation is a massive issue for Maori. It raises huge questions about the issues of protection, of informed consent, of tangata whenua control of information and medical processes, of access to information and medical care - and most of all to cultural respect.

The issue of the removal of body parts without seeking informed consent has a heavy history for Maori. Controversy arose in 1991 regarding the removal of organs from Maori bodies either to determine the cause of death or for research or transplant purposes; some cases dating back to 1963.

In many cases the removals were not necessary to determine the cause of death - as indeed I spoke about last night in reference to the Coroner's Bill. The practice broke tapu, it breached Maori cultural protocols, and many whanau were traumatised, suffering unacceptable delays before their tüpäpaku were returned.

I want to raise another way of looking at this issue. It is a way that the Maori party has been talking about in our communities, given that people spoke so strongly against the Bill when we presented it to them.

We raised the issue of live transplants between whanau members.

That actually seemed to catch on with our people.

They were quite accepting that is it really important that we take responsibility within our whanau to ensure the wellness of our whanau, and that we give life back to our own.

Despite the fact that we are not voting with you tonight, Jackie, I want to thank you because it is probably not an issue that we would have otherwise discussed.

I thank you for raising this legislation and, in a way, for creating the opportunity for us to take the issue back to our people.

Tissue matching is said to be an important aspect regarding ethnicity but I tell members of a recent situation when a whanau were looking for a live donor amongst themselves. In fact, the only match was the Pakeha sister-in-law.

The transplant took place but it was not one of the whakapapa family who gave the donation.

There are some very important stories for us to learn from.

In taking this issue to the people we learnt of the desire of Maori to know more about their legal rights and requirements in relation to the areas of organ donation and post-mortems. We heard many concerns that our people had about the process, and the aspiration of wider whanau members such as kaumatua and kuia to benefit from the information.

As a political party, we wanted to send this Bill to select committee, but ultimately our commitment to our constituency means everything, and we must be true to them. Over and over again this Bill was rejected outright.

Na reira, ka nui te mihi ki a koutou, tena koutou, tena koutou, tena tatou katoa.

ENDS

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