Human Tissue Bill - informed consent or one world view?

Tena koe, Madam Assistant Speaker. Tena tatou katoa.

As we were completing our analysis of the Human Tissue Bill, I came across an interesting article by Dr Jean Hera of Palmerston North, who was questioning the way society deals with death.



She said, and I quote:



“Watching over and caring for our dead, as is the Mäori custom, is also our culture and we need go back less than a hundred years to discover this.”



Dr Jean Hera is Pakeha – and the traditions she talks of – are the traditions of Pakeha culture. She went on to say,



“It isn’t well recognised that the present mainstream Päkeha experience that sees death treated with detachment and hidden away as much as possible, is not our death culture as Päkeha. It has been a recent intervention.



The Human Tissue Bill has been one of those rare opportunities before the Parliament, where the traditions and practices of our cultures, such as in the processes around death and dying, have been at the forefront of our discussions.



And I want to mihi to Sue Kedgley, and indeed the Health Select Committee, for the generosity of time to explore the issues central to te Ao Maori.



Any Bill which deals with the collection and use of human tissue from dead bodies was bound to evoke strong responses from Maori and indeed from myself.



For the processes around the collection or use of human tissue we have always seen as in the realm of whanau, hapu and iwi decision-making.



And as such, we in the Maori Party, have been fully alert to the concerns and fears that would be raised by the whanau of the deceased at the time of decision-making.



These decisions are cradled in a context defined by whakapapa; a context in which the philosophies of mauri, wairua, tikanga are sacrosanct.



For explanation of this context, a paper that Dr Paratene Ngata wrote for the New Zealand Medical Journal in 1995, is still relevant to this debate. Dr Ngata was addressing the context around death and dying from a Maori perspective, and I quote:



Death and dying, like giving birth and living, are considered natural and normal processes like breathing, eating, sleeping and creating life. Death is also a transitional process - from Te Ao Marama (the world of light) to Te Ao Pouri (the world of darkness), a normal part of the life cycle.

He said also:

And while contemporary Maori attitudes and beliefs have been significantly influenced by the Christian doctrine, any attempt to intervene in any natural and biological process - like Tane's struggle to conquer death - would generally meet with antagonism, disapproval and vigorous opposition.



Dr Ngata did go further to suggest that any changes to this process, must, as a priority involve the collective wishes of whanau and hapu. As he concluded, “consultation with, and participation of, iwi Maori in the debate is essential”.



The tension, between the “antagonism, disapproval and vigorous opposition” and the collection and use of human tissue, could only be addressed, in my view, through the effective participation and involvement of whanau and hapu in the debate.



I concur with the views of Dr Marewa Glover from the Faculty of Medical and Health Sciences, University of Auckland, who advised that having a few Maori on a committee or writing submissions is not enough to constitute proper consultation or engagement.



Tangata whenua deserve to receive all of the relevant data and robust information, in order to know what questions to ask, to be able to determine optimum outcomes, to assess whether whanau or hapu will derive some benefit from the proposals.



Despite our best intentions, the advocacy that came through at select committee was insufficient to make the changes necessary to enable whanau decision-making to have the final say.



During the process of the Bill, the Maori Party worked with the Parliamentary Counsel Office and drafted amendments that were tabled before the Health Select Committee.



The amendments were to enable an over-riding objection to the collection or use of human tissue to be raised by the deceased person’s whanau – the effect of which would be to prohibit any collection or use.



As the record shows however, the Committee voted down the amendments; with the consequent effect that wishes of the individual will prevail at all times and at all costs.



And the cost is quite simply – another piece of legislation which marginalises, ignores and rides over the cultural imperatives provided by tikanga Maori.



We were interested that the Bioethics Council – Toi te Taiao, agreed- despite also privileging individual rights over whanau - that the Bill does not provide adequate consideration or recognition of tikanga Maori.



Its submission reminded us all that in Maori worldviews, the body is considered tapu and therefore requires specific consideration and respect.



It considered that the collection and use of human tissue for research may inadequately respect the cultural values of Maori as it currently appears in the Bill. And so they suggested that more korero and wänanga with tangata whenua is needed to discuss issues involved with organ donation.



Much the same concerns came forward from the Dunedin Community Law Centre. It supported the right of families to object to the use of human tissue; noting that once an individual has passed away, his or her needs should become secondary to those still living.



This is very much at the hub of the debate around death in a Maori world view – we see the deceased as belonging to their family both through a genetic and cultural history –knowing that without our ancestors or our descendants, we would not exist.



Madam Speaker, there was one other opinion which very powerfully put the case for initiatives and measures to ensure equitable access for Maori to receive organ transplants.



Dr Jessica Hutchings - Resident Scholar of Te Mata o Te Tau, Massey University, came from the perspective of Maori relationships with new technologies such as genetic and nanotechnologies.



Her key point to the committee was the same as that raised by Dr Pat Ngata - that the issue of informed consent is critical.



In a context which is driven by considering the impacts on and the implications of mauri, whakapapa and ira tangata; the states of tapu and noa of organs; she strongly advocated for the development of information for Maori audiences to be developed by Maori.



We have raised these same two concerns – the call for whanau involvement, and access to effective information – throughout every stage of the progress on this Bill. But it appears, to no avail.



The Maori Party cannot support this bill in its current form.



Our people have spoken consistently and passionately, that the use of human tissue requires the recognition of both individuals and collectives in the consent process.



The Bill in its current form denies the collective involvement of whanau, by reducing the decision-level authority down to the cause of the individual. The Bill appears to place greater emphasis on the rights of the individual and the closest members of the family than to the extended whanau.



Although the bill does give some consideration to the wishes of the immediate family, the provisions remain insufficient to give whanau the ability to make an overriding objection.



The Maori Party asked for an amendment to the informed consent provisions, to include the words, ‘informed consent’ within a cultural context, which would have included all cultures. But sadly as in many other pieces of legislation in this house, there is only one world view and that is definitely not indigenous.



The intensivists who deal with families coping with trauma in intensive care clearly understood all the issue, because transplant does not occur during the normal process of a person dying of a disease; it happens when families are in trauma.

Tangata whenua are actually not totally opposed to transplant. Whanau have been more than willing to donate organs between their members while living, and this already happens. It makes sense to us as tangata whenua.



Dr Jessica Hutchings asked the question - is our current health system 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?



We would have to say, no, and it is because of our deep seated caution around such significant issues for Maori, that our position at this second reading, will be to oppose it.



Never a Party to give up however, the Maori Party will be tabling a Supplementary Order Paper at the Committee Stage of the Bill to give this House the opportunity to create legislation which the Health Select Committee by majority passed up - the opportunity to create legislation that is inclusive of a Maori worldview.