21 May 2015

Plea for Māori engagement in tissue research

8:42 pm on 21 May 2015

A group of Māori intellectuals are calling on tāngata whenua to become more open to supplying human tissue to improve their health.

Generic DNA helix

Generic DNA helix Photo: 123rf

The researchers want them to become more receptive to the idea and say tikanga needs to continue evolving to make sure that happens.

Practices such as donating organs and giving blood are traditionally frowned upon by Māori, as the body is considered sacred.

The University of Waikato's Māori and Indigenous Governance Centre co-hosted a symposium this week to discuss the issue.

Its director Robert Joseph said while Māori tikanga - or customs and practices - needed to be respected, they also needed to keep up with medical developments.

"Our tikanga needs to change here with technology and time - and it does and always did evolve. Because the human body is considered tapu, the process of taking and storing tissue can be complicated and medical staff need to be culturally sensitive."

The University of Waikato's Māori and Indigenous Governance Centre's research project, 'Te Mata Ira', is focused on producing guidelines for hospitals and laboratories to ensure the correct cultural protocols are applied when using Māori tissue.

Mr Joseph said Māori people needed to engage in conversation to increase its use.

"Māori need to be engaging with those involved with biobanking and gnomic research - we need to be at the table with those making decisions about this property in terms of what are our cultural views, what are the protections, what are the checks and balances, and what are the benefits. Also we need to be making sure we are at the committees that are deciding what is happening to the material."

Mr Joseph said Māori fear they will lose their identity by allowing tissue to be shared.

He said to overcome that they were researching and developing clearer cultural protocols to protect themselves spiritually.

"Saying things like karakia and then respecting that material, not just treating it as a commodity - acknowledging where it came from and involving the person and their family. For indigenous people what is important are relationships.

"You have an automatic relationship between the researcher and the researched, and the institution and the Māori family and the tribe - there should be a relationship there of dialogue."

The research team's cultural advisor said Māori were hesitant to share tissue because they felt many researchers did not understand how sacrosanct it was.

Moe Milne said they suffered from high rates of disease such as cancer and diabetes and more acceptance of genetic research would help in finding solutions.

Mrs Milne said more respect and better communication was key.

"Māori are saying we do want to participate, but when we have participated in the past and you have not honoured your part of the relationship, and therefore if I am going to engage now these are the conditions that I want to engage within and one of them is that you take care of my whakapapa [genealogy]."

She said the symposium was an encouraging step forward.

"I'm finally getting quite excited about the amount of agreement between all the different parties. From the ministry officials to the researchers to iwi."

A senior research fellow who organised the symposium said it was a great chance to discuss issues and ideas with international indigenous researchers.

Maui Hudson said one of the challenges was taking all the information they had researched and using it effectively.

""The next project is really to think about what does it mean to govern data and ensure it is used in an appropriate way - what are the sort of questions that should be asked of it?"

Cultural advisor Moe Milne said after two years of research they would be delivering a report for publication to the Health Research Council by the end of this year.

She said the researchers were also in discussion with the National Ethics Advisory Council.

Mrs Milne said having Māori guidelines on the handling of tissue in biobanking [storage of cells] and in genetic research would make the relationship between Māori and medical professionals easier.

Get the RNZ app

for ad-free news and current affairs