Sharples Pita: Human Tissue (Organ Donation) Amendment Bill — Second Reading 
Sharples Pita: Human Tissue (Organ Donation) Amendment Bill — Second Reading 
[Volume:643;Page:12905] 
Dr PITA SHARPLES (Co-Leader—Maori Party) 
: 
 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 that denotes the end of one’s physical existence the release of that person back into the ground—complete final; his or her life on Earth done. In very many ways it bears similarity to 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 that starts at birth with the burying of the newborn’s placenta back into its whanau land. That process is completed with the burial of that same person as he or she returns 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 in the sense of sanctity of tapu and kawa. They are not concepts that are easily talked about or understood in this House but they are concepts that are essential in any discussion around organ donation strategies to enhance health and well-being renal disease and the collection and use of human tissue. These concepts are weighty issues to be considered fully by the 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 that is absorbed into the process of whanau decision-making. 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 with the wider context of whanau hapu and iwi. The proposal therefore to prevent whanau members from being able to override the wishes of an individual is a proposal that 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 of a loved one there are more issues involved than are evident in a medical discussion around kidney heart lung liver and pancreas transplantation. Tangata whenua are acutely aware of the data. The rate of Maori dying from kidney-related disease is four times greater than that for non-Maori and Maori receive a disproportionately lower number of kidney transplants than is required. But we cannot resile from the reality that organ donation and transplantation is an issue that is intensely sensitive to our people as it crosses cultural boundaries and impacts on tikanga Maori. 
The answer as always lies in the quality of the korero. The Otakou branch of the Maori Women’s Welfare League made the point in its 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 or talk to be had with the whanau in the process of obtaining informed consent. That guide  
Hauora o te Tinana me ona tikanga 
 had itself arisen from the controversy that erupted in 1991 regarding the removal of organs from Maori bodies either to determine the cause of death or to use for research or transplantation purposes. Some of those cases dated back some 44 years to 1963 and included the removal of the heart of a baby who had died from cot death organs from an 80-year-old woman part of the brain from a person who had died from 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 breached cultural protocol and caused unacceptable delays in returning the tupapaku to the whanau. Another result of the 1991 controversy was that the then Minister of Justice appointed the first Maori coroner Gordon Matenga. 
I have taken the time to recall this history because I believe that the hurt amongst our communities and the suspicion that body parts may be removed without consent being sought from the whanau have a very recent past. It is a history powerfully told in Patricia Grace’s novel  
Baby No-Eyes 
 which is a novel that led to her being named as the 2008 Laureate of the Neustadt International Prize for Literature which is the most prestigious international literary prize after the Nobel Prize. The novel merges the telling of the contemporary trauma of eyes being removed for the purpose of genetic experimentation and research with the cultural context of mauri whakapapa and ira tangata. 
When the Code of Health and Disability Consumers’ Rights regulations came in back in 1996 the rights of consumers included the rights to make an informed choice to 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. In order for Maori audiences to be well informed information needs to be conveyed in a way that is clearly understood and that reflects Maori world views. Misinformation and contradictions will cause only unnecessary stress. The concern that Maori have consistently expressed that body organs are tapu and should be interred with the body must be listened to and must 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 from those of non-Maori. Maori may be concerned about the impacts on mauri and the implications of states of tapu and noa of organs. There may be considerations about the performance of karakia. 
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 and Maori control of information and medical processes and that the health system is 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 it at its second reading. 
I compliment Dr Jackie Blue; she has done a marvellous job. We have taken this bill up and down the country and it has given our people the opportunity to debate the issues and come out with things and to think about their cultural values at this time. I congratulate Dr Blue on bringing the bill to our notice. Thank you.