Approach three: ‘Tangata whenua’

This approach requires that the government work with Māori to ensure that the Treaty of Waitangi principles are applied to pre-birth testing.

The principles of partnership, protection and participation require that the specific needs of Māori are met and that Māori values are taken into account. Adequate resources must be available to inform and empower Māori, so they can develop tikanga and matauranga about infertility and pre-birth testing.

Core values for Māori are whānaungatanga, hapūtanga, iwitanga and tino rangitiratanga[For an approximation of the meaning of Māori terms, see the glossary].

Tikanga

• many Māori believe that social pressures and expectation are slowly breaking down cultural values
• tikanga relevant to pre-birth testing include whakapapa, tikanga mauri, whenua, hapū.

More needs to be done to engage Māori at iwi level, with more time and assistance made available, so that iwi can develop tikanga about pre-birth testing. This would require the development of a resource, using language and concepts that are meaningful to Māori, and having it delivered in a culturally appropriate manner. Then kōrero over time would lead to the development of tikanga.

Ma te tika te pono me te aroha

It’s about whānau

Māori people have many different views on pre-birth testing. Some people do not wish to undergo any testing at all. In whānau with serious genetic conditions, some people have chosen to use testing to avoid the birth of children with the condition, while others have decided to continue the pregnancy even though they know the child will have the condition. Mana whānau reflects the importance of pre-birth testing for some whānau.

Many Māori see these decisions as being matters for the whānau to decide rather than individual decisions being made by the mother / parents, because the decisions may affect future generations.

Even if an individual makes a decision which is different from what the whānau wanted, the whānau will usually accept the decision and support the whānau member. Māori value the support that the whānau can provide. Manaakitanga has been described as nurturing relationships, looking after people, and being very careful about how others are treated. This is consistent with respect for their mana, personal authority or dignity.

Support for whānau includes ensuring provision of sufficient support for whānau with disabled children and the need to have access to affordable services.

Naku te rourou nou te rourou ka ora ai te iwi

Risks

Pre-birth testing is more than just a medical matter and the effects may be different from those intended. There is a need to consider the risks from pre-birth testing. This includes risks to whakapapa and the risk of discrimination against others, particularly people with disabilities.

Some people say that tests should not be used to reinforce stereotypes and prejudices. For example, although there is not yet a known genetic basis for homosexuality, there is concern that, in the future, testing may be used to discriminate against homosexual people.

There are risks that tissue or blood might be misused. In traditional Māori culture, body parts separated from the body were accorded a ceremony similar to a tangi. Māori need to know that they have the right to have their tissue / blood returned to them or destroyed after testing. It is important the tissue / blood is stored or used for research only with appropriate consent.

He tapu te tangata ahakoa ko wai

Better information

Whānau with known genetic conditions must have access to culturally appropriate genetic counselling and information. This will allow them to talk about and decide whether they wish to use PGD and/or testing during pregnancy.

Māori women and communities need to know why it is good for them to see a health practitioner early in pregnancy for general health care as well as having options about pre-birth testing. This information needs to come from health professionals, community leaders, churches and Māori agencies, as knowledge will help dispel fear.

Te manu i kai te matauranga nona to ao

Information given before screening and testing should be supportive, relevant to the needs of the woman / whānau, easily understood and available in te reo Māori.

It’s not just the information that is important, but also who gives it and how it is given. Information should be given at the right moment when the women / whānau are ready to hear it. There should be enough time to understand and think about the information and the choices that might have to be made.

Te kai o te rangatira he korero

Research

Māori want the opportunity to shape the direction of research which uses their genetic material. This could be achieved by Māori having leadership roles in research teams, backed up by genuine kōrero between researchers, funders and Māori research subjects.

Māori must be able to protect their cultural practices and their tikanga and participate fully in New Zealand society as Māori. This can only occur if they are able to exercise tino rangatiratanga in relation to their values and cultural practices. With regard to proposed research this means, that there must be dialogue about what problems we are trying to solve and what sort of world we are trying to create.

There is also concern that some research into genetic conditions affecting Māori might not benefit them. For example, the commercialisation of genetic tests might make them unaffordable for some whānau.

Access

Many Māori women miss out on the first trimester screening tests, because they begin their antenatal care after the 14th week of pregnancy. There are many reasons for this, such as:

• Lead Maternity Carers are not funded to provide care for pregnant women until the second trimester, and many do not sign a care plan until the 14th week of pregnancy. This does not stop a woman from visiting her GP or receiving advice from her midwife, but the system might discourage some women from early care
• if their Lead Maternity Carer of choice is fully booked there might be delays in finding another
• women who have had a child may feel that they do not need to attend as early because they already know what to expect during pregnancy and childbirth. They might also have difficulty arranging childcare in order to attend antenatal care
• women are more likely to begin antenatal care late and attend less often, if their pregnancies were unplanned, they had a negative reaction to the pregnancy or they were not employed prior to pregnancy.

In addition, many Māori women who receive a positive result from a pre-birth test might not be referred for suitable counselling and support services. This is because there might be limited availability of clinical genetic services or because some medical professionals and Māori families do not know about the existence of these services.

What can be done?

• involve iwi, hapū and Māori organisations when developing policy and setting priorities with respect to pre-birth testing
• produce relevant, appropriate information about pre-birth testing, genetic counselling and care during pregnancy
• provide fully funded pre-birth testing which is available to all women / whānau who choose to have testing
• provide adequate support for Māori women / whānau whatever choices they make in response to the results from pre-birth testing. This includes adequate support for families with disabled children
• ensure that tissue and blood may not be retained or used for research without specific informed consent
• if research uses Māori genetic materials, iwi, hapu and individuals must be made fully aware of the purpose of the research and its potential harms and benefits before the research begins. Ethics committees must be satisfied that this will happen before they approve the research project.

For and against the approach: ‘tangata whenua’

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