Maori Perspectives on Pre-Birth Genetic Testing with Particular Focus on PGD
Henaghan, Mark; Tipene-Matua, Bevan
To gain a full appreciation of a likely Mäori 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. Mäori 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 Mäori 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 Mäori perspectives of pre-birth genetic testing within broader issues confronting Mäori as a result of the biotechnology explosion in the last ten years and the completion of the human genome project. It details Mäori values, concepts, cosmology and traditions to provide a platform to analyse the implications of genetic testing on Mäori people and Mäori 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 Mäori. Similarly, in order to understand how pre-birth genetic testing may influence Mäori, it is necessary to have some understanding of Mäori cultural values, beliefs and perspectives. Literature on Mäori responses to genetic engineering is useful to assist with this understanding particularly as there is limited literature and information on Mäori 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 Mäori 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 Mäori perspectives of pre-birth genetic testing. Participants were chosen because of their broad range of expertise in matauranga Mäori (Mäori knowledge), Mäori 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 Mäori 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 Mäori world view on the possible impacts of pre-birth genetic testing on Mäori. 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 Mäori. Pre-European Mäori 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 Mäori 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 Mäori who want to participate in this discussion from a general perspective or from a Mäori perspective. This is a classic example of the diversity in Mäori views. We do not seek to homogenise Mäori and present a singular Mäori world view on pre-birth genetic testing. Rather, as a participant states below, we seek to explore the diverse perspectives from a particularly Mäori point of enquiry. "So there’s not a clear picture one way or the other about where Mäori today might be. There’s such a mix but I think the task that is becoming clearer is that where we as Mäori 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 Mäori Catholic, you’re a Catholic actually and your views are Catholic...and so that’s where it’s coming from. So what is this Mäori view...there is a challenge to distil out what is distinctively Mäori 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]." Mäori 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 Mäori 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 Mäori 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 Mäori 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 Mäori 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 Mäori retain the right and ability to define and redefine the application of Mäori customary values to pre-birth genetic testing. This means that Mäori 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.
Series: Human Genome Research Project
Keywords: Preimplantation Genetic Diagnosis; Genetics; Ethics; Human genome; Enhancement; Prenatal testing; Treaty of Waitangi; Maori
Research Type: Chapter in Book