Human Tissue Bill

First Reading; Tuesday 14 November 2006

Tariana Turia; Maori Party health spokesperson

As a nation it appears we have one of the lowest organ donation rates in the Western world. And yet there are currently around 400 people on the organ waiting list; 80% of whom need kidneys.

What we also know is that Maori both donate and receive proportionally fewer organs than non-Maori.

Mr Speaker, these figures are of grave importance to our survival, our right to live a healthy life, our well-being assured.

But the Bill we are discussing today, is of an entirely different nature.

A key distinction that we must make is the difference between donating tissues from a person while alive; and the donation of tissues from a person who is deceased.

The purpose of the Human Tissue Bill is to help ensure that the collection and use of human tissue from dead bodies is conducted within the context of a consent framework for the collection and use of such tissue.

The issue of consenting to tissue donation is best understood by Maori as the difference between life and death.

The transfer of organs from one person to another is a major issue for tangata whenua. Indeed, such organ transplantation is critical to the retention of whakapapa - an issue of vital concern of our wellbeing.

As such, we were quite surprised that a recent survey on radio Waatea confirmed that 79% of Maori believed that Maori should be donors. It is our duty and our responsibility they said, to do all that we can, to uphold the sanctity of the human life.

And I would just remind the House that it was Grant Kereama, who donated the kidney to perhaps New Zealand’s most famous donor recipient, Tongan rugby player and Allblack, Jonah Lomu. It was an act of selfless giving, by a friend to a friend. And it shows that it can be done.

But I return again to the hub of the issue – the difference between human tissue donation from a person while they are alive, or after they have passed on.

The value of considering organ donation as an option, to support the life of a loved one cannot be under-estimated.

But there is also a very strongly held set of beliefs which must be respected in understanding the relationships between the realm of the living and the realm of the dead.

In essence, never the twain shall meet.

Mr Speaker, the spiritual beliefs of tangata whenua around death and dying cannot be smoothed over, rushed through, minimised for the purpose of expeditious law-making.

The beliefs and practices emerging from our values, are a living and vibrant aspect of our culture. And they have particular relevance to the passage of this Bill. A paper by Greg Lewis and Neil Pickering published in the New Zealand Bioethics Journal explains such concepts, and I quote:

“Maori beliefs offer fundamental reasons for not donating organs.

These include the adverse impact that organ donation may have upon donors and their whanau, and the adverse impact that receiving a donated organ may have upon recipients and their whanau”.

The deep-seated views held within our whanau about the relationship between the living and the dead, cut to the very heart of our spiritual and cultural worldviews.

The House is not the place to enter into negotiations about either spiritual or cultural philosophies, values and attitudes. Suffice to say, the concept of the Circle of Life is one which has universal application, but special recognition for tangata whenua.

In essence, to fail to return an individual whole – to Papatuanuku, the Earth Mother – fails therefore to accord due respect to the sacred value of whakapapa.

The Human Tissue Bill states that human tissue donation will occur only with proper recognition and respect for the –

- autonomy and dignity of the individual from whom it’s collected;

- the spiritual and cultural needs of those in close relationship with person who has died;

- and the cultural, ethical, spiritual implications of the collection and use of human tissue.

The problem is, that for Maori, the consistent message that we have received, is that this Bill would not even get to first base, in its flawed assumption that Maori will accept the notion that organ donation between the dead and the living is appropriate.

The circle of life demands that all life is derived from the earth and returned to the earth; complete.

These spiritual concerns surrounding human tissue are also influential in other cultures – and are clearly reflected in the consent rates amongst Maori, Pasifika and other peoples in the context of posthumous donation.

Mr Speaker, we must contrast these very low donor statistics, with the growing ethnic diversity our population is experiencing in Aotearoa. Statistics New Zealand advise us that the Māori, Asian and Pacific populations are all projected to increase their share of New Zealand's population.

In light of the increasing ethnic diversity, issues which cut to the very core of cultural beliefs amongst Maori, Pasifika and other ethnic populations, must be taken seriously.

And the key to change is always through education.

If we, as a nation, are truly of the view that the collection and use of human tissue is necessary to advance medical education, investigation or research; or for any other purposes; then we are honour bound to discuss these issues fully as a nation.

And that is where the hope must lie. As a nation, we need to have the debate.

For Maori there will be many varied questions.

What measures might be needed to safeguard the process of removing and transplanting organs for whanau Maori?

And there will be many other issues –neither appropriate to raise in this forum, or indeed, restricted to the discussions within one’s own whanau, hapu or iwi.

That there will be questions is, however, undeniable.

The Maori Party believes that our communities need time to discuss the issues involved; they need information which is effective and appropriate for such discussion; and the discussions need to be undertaken in ways which can engender the trust and confidence of all concerned.

The issue of informed consent is critical. Any information that is about making a choice needs to be specific to the needs of the particular audience.

We need to fully prepare for such discussions, so that we guarantee the information process is capable of responding appropriately and sufficiently to issues of protection, informed consent, control of information and medical processes, access to information and medical care.

Has sufficient regard been given to exploring the risks?

Communities need to be engaged in a very real way. Having a few token ‘others’ on a committee or writing submissions is not enough to constitute proper engagement – those consulted require comprehensive information and relevant statistics in order to discuss and make decisions.

Mr Speaker, it is not inconceivable, that in future a whanau or hapu may weigh up all the determining factors, and conclude that whanau may indeed derive some benefit from the donation of human tissue – and as such, it should be up to them to decide.

This debate has already been taking place where there are whanau and hapu members who believe, in fact, that our bones are probably more important than our organs.

If the Government was indeed committed to the use of human tissue after the donor’s death; then we would see due regard accorded to investing in education such as a nationwide series of hui on this issue.

Finally, the Maori Party wants to place on record, our concern at the proposal in this Bill that the wishes of an individual can over-ride the collective process of whanau decision-making.

In the Bill itself it states:

Formal recorded consent is required from the individual for organ or tissue donation, or from the person or persons nominated to give consent (clause 32) – or, if absent, the consent of whanau or a senior next of kin.

That doesn’t sit well with our party. No individual stands alone.

Our kaupapa, our tikanga, as tangata whenua, describe an individual person or body not as merely his or her own, but as a connected and vibrant manifestation of whakapapa, the ancestral line. The link, therefore, in the chain of whakapapa is of significance to the whanau as a whole, and decisions to severe such a link have implications for the well-being of whanau, past, present and future.

Mr Speaker, there is nothing more certain in the Circle of Life, than the inevitability of death.

The Maori Party will not be supporting this Bill – because it has been the strongly held view at the hui that we have been to and discussed this issue – to oppose the Bill in light of our kaupapa, our tikanga, and our worldviews.

Tena koe.

ENDS

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