Editorial: Bioethics and Politics: The Axing of the Bioethics Council, Toi te Taiao

Michael McCabe
Issue 27, April 2009

The recent axing of the Bioethics Council – Toi te Taiao – by the National Government is a matter of regret and real concern.

Set up in December 2002 as a recommendation from the 2000 Royal Commission of Enquiry into Genetic Modification, Toi te Taiao has provided a very important mechanism for informing and engaging with the public on the use of new biotechnologies and other bioethical issues. Its origins help to explain its initial focus on genetic modification which led to the Report, "The Cultural, Ethical and Spiritual Dimensions on the Use of Human Genes in Other Organisms" (2004), and its second major Report, "The Cultural, Ethical and Spiritual Aspects of Animal-to-Human Transplantation" (2005). Since then, in accordance with its brief to provide independent advice to Government on biotechnological issues that involve significant cultural, ethical and spiritual dimensions, Toi te Taiao has facilitated widespread consultation in human assisted reproduction which led to its third major Report in 2008, "Who Gets Born? Advice to Government on New Biotechnologies."

The Royal Commission of Enquiry recommendation to establish Toi te Taiao reflected clear public concern expressed at the time that decision making about the new biotechnologies was not adequately addressing the ethical, cultural and spiritual dimensions. Are we now to think that this has changed? The Minister responsible, The Honourable Nick Smith, obviously thinks so. His reported words are that the Council was being scrapped because other government agencies were doing the same work. For at least two reasons, such a view reflects a limited understanding of the significance of bioethical issues and their impact on New Zealand society.

Firstly, it is certainly true that ACART, the Advisory Committee on Assisted Reproductive Technology, is charged with consultation on the use of assisted reproductive technologies. However, the reasons for, as well as the range and scope of, the consultation undertaken by Toi te Taiao constitute significant points of difference. Specifically, Toi te Taiao was not to approve or offer opinion on specific proposals; their brief was to look at the bigger picture and to facilitate discussion in such a way as to let the key values and concerns emerge – essentially a bottom up approach that functions like a large 'chat room' for dialogue and open-ended exploration and education by a wide range of New Zealanders. By contrast ACART's role is much more focused, the emphasis being on consultation with the public with a view to shaping very specific guidelines on very specific proposals. ACART employs a very different starting point based on prepared documents and written propositions that are shaped within the framework of the HART Act and which draw on a much narrower interest group.

Secondly, bioethical issues and the implications of the use or non-use of biotechnology are much wider than a focus on assisted reproduction and genetics. As the Interchurch Bioethics Council recently noted, the demise of Toi te Taiao "leaves other important areas in bioethics (xenotransplantation, euthanasia, nutrigenomics, nanotechnology etc) uncovered." Other significant bioethical issues, such as the allocation of healthcare resources or what condition gets screened are yet to be addressed in any comprehensive and public way. The funding of a particular drug not on the pharmaceutical schedule for example cannot continue to be addressed in an ad hoc or politically expedient manner. Neither can it be adequately addressed by emotive, simplistic, and selective argument that too often characterises debate in the media.

The issues relating to bioethics and biotechnologies are not going to go away. Indeed they will only increase in scope and complexity, a situation made even more difficult by economic recession and the need to spend health dollars wisely. Toi te Taiao had established some innovative ways of exploring the critical bioethical issues of our time - ways that have brought the issues to life for a much broader audience than is otherwise the case. We require a body such as the Bioethics Council that is clearly independent of any lobby group, including the government of the day. This independence is critical to its ability to develop and implement the building of trust between the public and various stakeholders, including government. In reality, the demise of the Bioethics Council means there is now no body of qualified persons independent of any lobby group to debate the issues.

Indeed, it is somewhat ironic that it is the Bioethics Council's political independence that has ultimately contributed to its undoing. The price of its independence has always been its political vulnerability, its existence able to be wiped out by a simple caucus decision without the need for any consultation or public accountability. What are we to make of this? What are we to make of a decision which ignores the voice of the New Zealand people as articulated by a comprehensive Royal Commission of Enquiry?

Indeed, the very manner in which the decision was made to disestablish Toi te Taiao sends a double message; bioethical issues are obviously considered as being of no real importance and, looking to the future, there is a very real risk that these issues will no longer be debated in an open and inclusive way.

Even in difficult economic times political expediency and pragmatism should not replace considered debate. The cultural, spiritual and ethical implications of bioethics are simply too far-reaching for our New Zealand society to be left to "in-house" debate or to "vested interests".

Rev Michael McCabe
Director
The Nathaniel Centre