Maori

Question 1

What is whakapapa?

Answer 1

A genealogical construct connecting human/non-human, animate/inanimate

Question 2

Why is whakapapa related to genetics?

Answer 2

Any tissue that contains DNA and is connected to whakapapa is taonga (precious) and therefore is highly valuable

Question 3

What is takoha?

Answer 3

The gift of responsibility- in this case when tissue is given the responsibility is on the person conducting the study to look after it

Question 4

What are the principals for research with tissue?

Answer 4

the level of comfort
the level of control
the level of integrity

Question 5

What are the protocols for research with tissue?

Answer 5

sharing the gift
spirit of the gift
returning of the gift

Question 6

What are the important components of sharing the gift?

Answer 6

Establishing a relationship through consent (spiritual and physical)
Establishing a level of comfort
Expectation of reciprocity

Question 7

What are the components of spirit of the gift?

Answer 7

Respect for the spirit in which the gift was given
Integrity of decisions about its use
Adhering to the parameters of consent

Question 8

What are the components of returning the gift?

Answer 8

Access to all reports
Report on all uses and outcomes
Check on satisfaction with process and outcomes
Opportunity to exit relationship

Question 9

How do Maori feel about data?

Answer 9

They think data is tissue which is theirs
They expect to have lots of control over what happens to it
They don’t like the idea of linking data between systems because becoming anonymous data means they no longer have mana/control over it
Everything must be transparent to improve “mauri” (trust in the integrity of the system)