Led by Prof Mark Henaghan, Dean of Law, Otago University

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Led by Prof Mark Henaghan, Dean of Law, Otago
University With the participation of Prof Don
Evans, Director, Bioethics Centre, Otago Prof
Stephen Robertson, Womens and Childrens 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/genome e-mail
genome.lawpolicy_at_otago.ac.nz
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Making Better Decisions?An indigenous
perspective of PGD
Danny Tuatoo February 2006
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NGÄ RÄ O MUA

• Tohunga
• Whakatö tamariki
• Whakapä
• Whakatahe
• Makutu
• Tapu

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NGÄ MAHI Ä NGÄ TUPUNA

• Ancestral activity informs
• the present generation

Rawiri Taiwhanga
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What is PGD?

• If you know of the whereabouts of a PGD, please
  get in touch...

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PGD in Progress
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Submissions to NECAHR Mäori 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

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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

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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

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Ira Tängata

• Definition
• The word ira means life principle or more
• specifically gene (Taura Whiri i te Reo Mäori
• 1996164), 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 200342)

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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.

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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.
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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 200415

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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 20035)

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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

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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?

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Tikanga Framework

• 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

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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