Human Tissue (Organ Donation) Amendment Bill

In the Book of Common Prayer there is a phrase that is commonly used in English burial services, as clods of clay are ceremonially cast on to the coffin. That saying is, “as we commit this body to the ground, earth to earth, ashes to ashes, dust to dust’”.



It is a phrase which denotes the end of one’s physical existence, releasing that person back into the ground, complete, final, their life on earth done.



In very many ways, it bears similarity with the spiritual process that we as tangata whenua - the people of the land - recognise in returning the tupapaku, the body, back to the land, to the embrace of the earth mother.



The process of dying typified in sayings like "i whanau tatou ki te mate" is a process which starts at birth, with the burying of a new born’s placenta back into their whanau land. That process is completed with the burial of that same person, as they return to the original spring of life, the great ancestress, Papatuanuku.



The concepts associated with burial – the connection between birth and death – the healing, grieving and cultural practices of iwi Maori are deeply steeped with a sense of sanctity, of tapu and of kawa. They are not concepts which are easily talked about or understood in this House.



But they are concepts which are essential in any discussion around organ donation, around strategies to enhance health and wellbeing, around renal disease, around the collection and use of human tissue.



Mr Speaker, these concepts are weighty issues to be considered fully by whanau, hapu and iwi when considering the context of life and death.



These issues are more than that of an individual signing a register to either confirm or object to the opportunity to be an organ donor.



It is a collective process for Maori, one which is absorbed into the process of whanau decision-making.



And so as we in the Maori Party considered this Bill at our caucus, we were always conscious that the views of individuals must always be balanced within the wider context of whanau, hapu and iwi.



The proposal therefore, to prevent whanau members from being able to over-ride the wishes of an individual is a proposal which clearly privileges the individual and relegates the collective to an inferior status.



Whilst Maori recognise the immense benefit of wider organ donation, and of course are open to consider any solution that may improve the quality of life for a loved one, there are more issues involved than is evident in a medical discussion around kidney, heart, lung, liver and pancreas transplantation.



Tangata whenua are acutely aware of the data:

that the rate of Maori dying from kidney related disease is four times greater than for non-Maori;
or that Maori receive a disproportionately low number of kidney transplants than is required.


But we cannot resile from the reality that organ donation or transplantation is intensely sensitive to our people, as it crosses cultural boundaries and impacts on tikanga Maori, such as we would see with the interference of whakapapa.



The answer, as always, lies in the quality of the korero.



The Otakou Maori Women’s Welfare League made the point in their submission to the Select Committee that there will be ongoing issues for Maori around organ donation, and that Maori will continue to debate the advantages and disadvantages, no doubt with or without this Bill proceeding.



Eight years ago in 1999, Te Puni Kokiri produced a guide for the removal, retention, return and disposal of Maori body parts and organ donation which in essence, reiterated the absolute need for korero to be had with whanau, in the process of obtaining informed consent.



That guide, Hauora o te Tinana me ona tikanga, had itself arisen from the controversy which erupted in 1991 regarding the removal of organs from Maori bodies to either determine the cause of death or for research or transplant purposes.



Some of these cases dated back some 44 years ago to 1963 – including the removal of the heart of a baby who died from cot death, organs from an eighty year old woman, part of the brain of a person who died of lung cancer, and the heart from a patient in a psychiatric institution.



In many cases, it had not been necessary to remove the organs to determine the cause of death. The practice broke tapu, it breached cultural protocol and caused unacceptable delays in returning tupapaku to whanau.



Another result of the 1991 controversy was that the Minister of Justice appointed the first Maori coroner, Gordon Matenga.



I have taken the time to recall this history, because I believe the hurt amongst our communities, and the suspicion that body parts may be removed without consent being sought from the whanau has a very recent past.



It is a history powerfully told in Patricia Grace’s novel, Baby No-Eyes, a novel which led to her being named as the 2008 Laureate of the Neustadt International Prize for Literature, the most prestigious international literary prize after the Nobel Prize.



That novel merged the telling of the contemporary trauma of eyes removed for the purposes of genetic experimentation and research, with the cultural context of mauri, whakapapa and ira tangata.



When the Code of Health and Disability Services Consumers Rights Regulations came in, back in 1996, the rights of consumers included the right to make an informed choice and give informed consent, and to be provided with services that take into account the needs, values and beliefs of Maori.



If we, as a Parliament are truly to recognise the needs, values and beliefs of Maori then we need to understand that this Bill, and the Government’s Human Tissue Bill, fall well short of the mark in terms of recognising tikanga in the consent protocols of removing and transplanting organs for whanau Maori.



Whanau, hapu and iwi Maori need time to discuss the issues involved, and in order to be well informed, information for Maori audiences needs to be conveyed in a way which is clearly understand and which reflects Maori world views.



Misinformation and contradictions will only cause unnecessary stress. The concerns that Maori have consistently expressed that body organs are tapu and should be interred with the body, must be listened to, and inform our deliberations.



Maori information will be best received if it has been developed and owned by Maori in the first place. The needs of Maori audiences taking part in any debate will be different to non-Maori.



They may be concerned about the impacts on mauri, the implications of states of tapu and noa of organs, there may be consideration about the performance of karakia.



Dr Jessica Hutchings from Massey University, has suggested that there may also need to be discussions around what, if any, whakapapa relationships might be made through organ donations, and what implications there might be regarding the rights and access which flow from whakapapa.



Mr Speaker, as I said earlier, this debate is a highly sensitive and complex issue of discussion for whanau, hapu and iwi. We need to feel confident that the health system is able to respond appropriately and sufficiently to issues around protection, informed consent, Maori control of information and medical processes, and to be fully versed in the management of risks.



This Bill does not sufficiently allay these concerns, and it is on that basis that the Maori Party will be voting against the Bill at this, its second reading.



I would just like to congratulate Dr Jackie Blue for bringing this Bill forward, and for the opportunity to debate the issues, and think about these matters in terms of our own cultural context.