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, OtagoDrs Ian Morison & Tony Merriman, Biochemistry Dept, Otago

Prof Sheila McLean, Law and Ethics in Medicine, Glasgow UniversityAssoc 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@otago.ac.nz

Making Better Decisions?An indigenous perspective of PGD

Danny Tuato’oFebruary 2006

NGÄ RÄ O MUA

TohungaWhakatö tamarikiWhakapä WhakataheMakutuTapu

NGÄ MAHI Ä NGÄ TUPUNA

Ancestral activity informs

the present generation

Rawiri Taiwhanga

What is PGD?If you know of the whereabouts

of a PGD, please get in touch...

PGD in Progress

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/equity5. Funding for Mäori counsellors6. Concerns about HLA tissue typing7. The process of consultation (ongoing)8. The need for community education

HART Act 20044 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

NGÄ UARA O NGÄ TIKANGAA number of values underpin tikanga -

Ira Tangata

TapuMana

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

Ira Tängata

DefinitionThe word ira means ‘life principle’ or morespecifically ‘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)

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.

ManaKo te mana i ahau,

Nö öku tupuna, nö tua whakarere

My power, authority and integrity comes from my ancestors, from time

out of mind.

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

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)

Concept of Balance

“ . . . Mäori lay great emphasis upon the conceptof 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

Tikanga Framework

Test 1: TapuStarting point : Does PGD breach tapu?

Test 2: MauriWhat are the risks to the future child?

Does an embryo biopsy damage mauri?Is an implanted embryo “different”?

Test 3: Take-utu-eaTest 4: PrecedentTest 5: Principles

5.1 Whanaungatanga5.2 Manaakitanga5.3 Mana5.4 Noa5.5 Tika

Tikanga Framework

Making Better Decisions?When values and beliefs conflictthere are rarely answers that areclearly right, at best there is ananswer 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