Abstract
To gain a full appreciation of a likely Māori response to pre-birth genetic testing it is necessary to contextualise the discussion within broader debates regarding emerging health biotechnologies.
For example, we were quickly reminded by research participants that power and control and the potential for social disparities to be accentuated were as much of an issue for pre-birth genetic testing as it is for other biotechnological innovations. Māori responses to genetic engineering biotechnology, the domination of genetic science by corporate agendas, and suspicion of health professionals and innovations resulting from successive negative colonial experiences, are factors likely to influence how Māori might respond to pre-birth genetic testing. This is articulated by Jessica Hutchings: "But because this area is, not so much about helping people, it’s more about making money and doing high profit driven sciences, that’s driven by a multi-national and a free trade agenda and globalisation...I know why it is, from my perspective it’s about money, it’s about profit and it’s about power."
This chapter situates the discourse on Māori perspectives of pre-birth genetic testing within broader issues confronting Māori as a result of the biotechnology explosion in the last ten years and the completion of the human genome project. It details Māori values, concepts, cosmology and traditions to provide a platform to analyse the implications of genetic testing on Māori people and Māori culture.
Broader issues around equality of access to health services, discrimination, and the potential erosion of cultural and spiritual values will need to be addressed if biotechnological innovations emerging from the mapping of the human genome are to be met with anything but suspicion and scepticism by Māori.
Similarly, in order to understand how pre-birth genetic testing may influence Māori, it is necessary to have some understanding of Māori cultural values, beliefs and perspectives. Literature on Māori responses to genetic engineering is useful to assist with this understanding particularly as there is limited literature and information on Māori views about pre-birth genetic testing.
The study conducted for this project is reported in Part B of this chapter where we reproduce and discuss the findings gathered from a selected group of Māori interviewees with relevant experience and knowledge (see the appendix to this chapter for an outline of the research process undertaken). The interviews both supplement and fill gaps in information gained from research literature and other sources, and provide depth and breadth for Māori perspectives of pre-birth genetic testing. Participants were chosen because of their broad range of expertise in matauranga Māori (Māori knowledge), Māori health, and socio-political issues regarding genetic engineering. Whilst participants were, for the first time, asked to consider the impact of pre-birth genetic testing on Māori they were able to draw heavily on their own knowledge base and considerable expertise.
With responses being considerably diverse, we have found that there is no clear single Māori world view on the possible impacts of pre-birth genetic testing on Māori. They range from a deep seated suspicion of the technology as merely another tool for powerful corporations and health professionals to increase societal inequities, to an acceptance based on the potential health benefits for whanau and tikanga Māori.
Pre-European Māori used social controls to protect and maintain the collective wellbeing of whanau and hapu. Arranged marriages, surrogacy, abortions and infanticide were practised and the importance of whakapapa paramount. Whilst these practices sometimes seem consistent with Māori cultural norms and values, there are diverse opinions about how and why they are carried out today. For example, one participant stated that abortion is not acceptable unless absolutely necessary and another felt it is important to distinguish between those Māori who want to participate in this discussion from a general perspective or from a Māori perspective. This is a classic example of the diversity in Māori views. We do not seek to homogenise Māori and present a singular Māori world view on pre-birth genetic testing. Rather, as a participant states below, we seek to explore the diverse perspectives from a particularly Māori point of enquiry.
"So there’s not a clear picture one way or the other about where Māori today might be. There’s such a mix but I think the task that is becoming clearer is that where we as Māori are actually engaging with like abortion or birth, as Catholics or Christians as Scientists or as just someone out in the suburbs...It’s that “Kia Ora”, well really you just happen to be a Māori Catholic, you’re a Catholic actually and your views are Catholic...and so that’s where it’s coming from. So what is this Māori view...there is a challenge to distil out what is distinctively Māori and that will only be a part of the answer because it doesn’t mean to say that we all should or even can embrace [it]."
Māori acquiescence of genetic testing is by no means universal or absolute. Caution has been expressed regarding the need to maintain the integrity of the process as unborn foetuses have a mauri and wairua that must be respected. The spiritual and emotional concerns of parents and whanau need to be accounted for as well as issues of equity and access to effective prebirth genetic testing services.
Identifying how to respond to Māori cultural values and practices in a regulatory regime is challenging. Regulation in any area must command popular support and be guided by principles of proportionality, certainty, clarity, accountability, efficiency and accessibility. As a Māori values system is distinct from that of the majority population, protecting its integrity, holism, nuances and institutions within a regulatory framework is difficult.
The Treaty of Waitangi (‘the Treaty’) affirms the ethical and legal basis for striving to appropriately recognise Māori values, and is supported by four other legal doctrines: international human rights standards, aboriginal title, the fiduciary duty imposed on the Crown, and the status of tikanga Māori as a system of customary law. The Treaty and supporting legal doctrines also establish the founding principles which must guide any regulatory response. The essential factor is ensuring that Māori retain the right and ability to define and redefine the application of Māori customary values to pre-birth genetic testing. This means that Māori who wish to engage with pre-birth genetic testing should be able to do so with confidence that their cultural preferences and customary values and practices will be respected and maintained.