1. Led by Prof Mark Henaghan, Dean of Law, Otago University With the participation of: Prof Don Evans, Director, Bioethics Centre, Otago Prof Stephen Robertson, Women’s and Children’s Health, Otago Drs Ian Morison & Tony Merriman, Biochemistry Dept, Otago Prof Sheila McLean, Law and Ethics in Medicine, Glasgow University Assoc Prof Mildred Cho, Center for Biomedical Ethics & Pediatrics Dept, Stanford Mr Bevan Tipene-Matua, Canterbury Polytechnic Institute of Technology Funded by NZ Law Foundation web: www.otago.ac.nz/law/genomewww.otago.ac.nz/law/genome e-mail: genome.lawpolicy@otago.ac.nzgenome.lawpolicy@otago.ac.nz

2. Making Better Decisions? An indigenous perspective of PGD Danny Tuato’o February 2006

3. NGÄ RÄ O MUA Tohunga Whakatö tamariki Whakapä Whakatahe Makutu Tapu

4. NGÄ MAHI Ä NGÄ TUPUNA Ancestral activity informs the present generation Rawiri Taiwhanga

5. What is PGD? If you know of the whereabouts of a PGD, please get in touch...

6. PGD in Progress

7. Submissions to NECAHR M ä ori Focus Group 1. PGD is not necessarily a major health issue for Mäori 2. A need for an overarching Mäori ethical framework 3. Treaty principles should also be used as a framework 4. Funding/access/equity 5. Funding for Mäori counsellors 6. Concerns about HLA tissue typing 7. The process of consultation (ongoing) 8. The need for community education

8. HART Act 2004 4 Principles All persons exercising powers or performing functions under this Act must be guided by each of the following principles that is relevant to the particular power or function: (f) the needs, values, and beliefs of Maori should be considered and treated with respect

9. NGÄ UARA O NGÄ TIKANGA A number of values underpin tikanga - Ira Tangata Tapu Mana Whakapapa Wairua Tikanga: Living by Maori Values. Mead: 2003 Maori Custom and values in New Zealand Law. 2001 He Hinatore ki te Ao Maori. 2001

10. Ira Tängata Definition The word ira means ‘life principle’ or more specifically ‘gene’ (Taura Whiri i te Reo Mäori 1996:164), while tangata means human. Ira tängata thus refers specifically to a human life that has inherited a collection of genes from the parents. The genes are more than biological elements, however. There is a godlike and spiritual quality to all of them because as human beings, ira tangata descend from ira Atua, the Gods (Mead 2003:42)

11. Tapu Tapu is a principle which acts as a corrective and coherent power Code for social conduct based essentially on keeping safe and avoiding risk Protection and prohibition Tapu is pervasive and touches all other attributes. It is like a personal force field which can be felt and sensed by others. It is the sacred life force which supports mauri (spark of life)... It reflects the state of the whole person.

12. Mana Ko te mana i ahau, Nö öku tupuna, nö tua whakarere My power, authority and integrity comes from my ancestors, from time out of mind.

13. Whakapapa Ko te whakapapa, te tatai mai o te tangata mai i nga atua ka whakaheke haere ki te tangata tuturu. Whakapapa is a metaphysical framework constructed to place onself within the world. It is a principle that orders the universe. “Knowing the whakapapa provides the framework for making decisions about the rights and wrongs of a thing. It can tell you whether it is natural or unnatural, appropriate or inappropriate.” Roberts & Fairweather 2004:15

14. Mäori Ethical Framework A Mäori framework for all new technology Tikanga Mäori is sometimes referred to as a framework of assessment. It provides a method for assessing a situation or event that challenges our thinking and values. The key point is that the framework provides a position not the position. It is difficult to imagine any social situation where tikanga has no place. Ceremonies relating to life itself – birth, marriage, sickness and death – are firmly embedded in tikanga. (Mead 2003:5)

15. Concept of Balance “... Mäori lay great emphasis upon the concept of balance. Indeed, it is often very helpful to see ethical problems, especially those that result in conflict, as related to a disturbance in the proper balance of things. In this case, solution of the problem resides in restoration of balance... “ Ethical Issues of New and Emerging Technologies. October 1999. Report No. 104

16. Tikanga Framework Test 1: Tapu Starting point : Does PGD breach tapu? Test 2: Mauri What are the risks to the future child? Does an embryo biopsy damage mauri? Is an implanted embryo “different”?

17. Test 3: Take-utu-ea Test 4: Precedent Test 5: Principles 5.1 Whanaungatanga 5.2 Manaakitanga 5.3 Mana 5.4 Noa 5.5 Tika Tikanga Framework

18. Making Better Decisions? When values and beliefs conflict there are rarely answers that are clearly right, at best there is an answer that is most acceptable... The tests identified here could be useful to families confronted by the dilemna of having to decide whether to participate in new technologies, new cures for medical problems, and new ways of doing things. Mead 2003: 350