Tariana Turia: Human Tissue Bill
Human Tissue Bill: Third Reading
Tuesday 8 April 2008; 5.30pm
Hon Tariana Turia, Health Spokesperson for the Maori Party
Kei te rereke te wairua o tenei Pire.
Just under ten years ago, Te Puni Kokiri produced a guide, Hauora o te tinana me ona tikanga: A guide for the removal, retention, return and disposal of Maori body parts and organ donation.
In the course of its investigations, the reference group was told of one instance where body parts had been retained in a hospital.
It appears that the Maori Health Services consultant had discovered a freezer full of body parts, all of them labelled with tags identifying the owners as Maori.
Despite the ire of medical specialists, the consultant set about advising iwi, and notifying the owners, nearly all of whom were extremely angry.
They could not understand how the clear instructions they had left with clinicians had been over-turned.
The Maori health consultant bore the full extent of their wrath, and subsequently that also of city council officials who were unhappy about being asked for plots to bury the unclaimed parts.
This case illustrates at many levels the range of contradictory and complex reactions that come with the issues at the core of this Bill.
It demonstrates the deterioration of relationship between Maori and the health system, the lack of trust or confidence that their cultural beliefs would be respected.
It illustrates also the reluctance of officials to actually respect what Maori have to say about such a sensitive and sacred area.
It revealed a distinct lack of accountability amongst medical professionals to their clients.
And it displayed the levels of discomfort Maori staff are exposed to, when attempting to remedy cultural errors.
All this, on top of the utter offence that was caused in the first place by the discovery of body parts ‘banked’ by the hospital without any acknowledgment of the distress this would cause the families involved.
Mr Speaker, human tissue and organ transplantation has become an effective way of treating serious health conditions such as heart disease or kidney or liver failure.
We in the Maori Party do not under-estimate the critical importance of advancing any knowledge we can to counter the rise in chronic disease and chronic medical conditions such as diabetes.
But at the hub of this issue is that transplantation usually depends on donations from people who have died, most often as the result of brain damage through stroke or accidents.
Culturally, the importance of being buried ‘whole’ is absolutely central to this discussion.
Concepts such as whakapapa, mauri, ira tangata, tapu and noa, are significant in our world view; as is informed consent - ensuring that the information we have about organ donation is relevant and meaningful.
And what I continue to learn, is that for some, nothing is sacred.
Informed consent is not an individual prerogative.
The application and use of human tissue requires the recognition of both individuals and collectives in the consent process.
It was on this basis that we in the Maori Party brought a range of amendments to the Bill to ensure the collective involvement of whanau was provided for in the provisions of the legislation, and we thank the Greens for their support.
The amendments we produced, would have enabled an over-riding objection to the collection or use of that tissue to be raised by a member, and on behalf, of that individual’s whānau or extended family.
The effect is that the collection or use of the tissue is prohibited.
In our world view, allowing individuals to be the sole decision-makers regarding whakapapa material is entirely contrary to our tikanga and the preference for collective involvement.
Although the Bill does include some consideration of the wishes of the immediate family it is by no means sufficient to accommodate the views of whanau decision-making processes.
Tangata whenua evidence was once again ignored.
Dr Jessica Hutchings, the Resident Scholar at Te Mata o Te Tau, in Massey University, has undertaken research in the area of genetic and nano technologies which confronts the critical issues around the cultural, ethical, spiritual implications of the collection and use of human tissue.
It was her analysis that the issue of informed consent is critical.
She has asked the question as to whether our current health system is capable of responding appropriately and sufficiently to issues of protection, informed consent, Maori control of information and medical processes, access to information and medical care.
Dr Marewa Glover from the Faculty of Medical and Health Sciences, University of Auckland, raised the concern also that Maori have not had the opportunity as whanau, hapu, iwi, to hui and discuss this matter.
Her challenge to Parliament was that Maori need to be engaged in a real way. Having a few Maori on a committee or writing submissions is not good enough to constitute proper engagement. Maori need good information and relevant statistics in order to discuss and make decisions of such importance.
If we go back to that awful example of the freezer of tagged bodyparts, we believe that it is an entirely reasonable expectation that in any laws or practices involving human remains, one would acknowledge the worldviews of tangata whenua as the indigenous peoples of this land.
In doing so, we believe that in a tikanga context, any issues relating to human body parts should take place in a discussion which enables the collective wishes of the whanau to be taken into account alongside that of the individual.
I want to pay a particular tribute to the Chair of the Health Select Committee, Sue Kedgley, for her commitment to really try to facilitate discussions at the table, which recognised the complexities of the cultural context for the legislative agenda related to human tissue.
I acknowledge also the legal advisors, inside and outside of Parliament, who worked hard to put forward options to wider the lens, to enable whanau to be able to decide the fate of the bodies of their loved one upon death.
We came to this Bill, as we do with every Bill, determined that all legislation can and indeed should recognise tikanga Maori as it was anticipated in the signing of Te Tiriti o Waitangi.
But ultimately we were disappointed in the failure of the Bill to recognise important cultural values and beliefs outside of a pre-imposed, pre-determined Western framework of individual rights.
Isn’t it time for Western values and beliefs to sit alongside tangata whenua when making decisions, not an either/or position?
No doubt this Bill will pass, despite our lone opposition to it. The Parliament has missed out on an opportunity to open up the consent process to recognise indigenous world views – and that is a weakness.
The discussions that need to be had around the protection and preservation of whakapapa materials have not been provided for by this legislation - and that is a pity.
I have to wonder how we will stimulate education and debate to face the challenge of the critical need to give life alongside of our tikanga?
What will be different?
Tangata whenua will know that we in the Maori Party argued, passionately, and proactively, for solutions that could ensure Maori were informed and were included in the wider debate around human tissue, organ donation and quality healthcare, access and choices.
We support live donations between whanau members, and we have discussed this matter with our constituency.
We have been extremely challenged by this Bill, and the life and death choices that are being debated before the House.
Our vote of confidence must always be a vote for whanau decision-making, a vote for whanau rangatiratanga, a vote for the safeguarding of whakapapa. We will not be supporting this Bill.