Bioethics Council Report Whitewashes Maori Concern

(Note: This release was originally posted under a BioEthics Council byline, Scoop apologises for this error.)

Bioethics Council Report Whitewashes Maori Concerns
Dr Paul Reynolds
The National Institute of Research Excellence for Maori Development and
Advancement

The 'Human Genes In Other Organisms Report' released by the Bioethics Council ''reads more like an advertisement for the biotechnology industry and mad scientists'' say Maori researchers. The release of the report, widely touted to canvas the cultural, ethical and spiritual concerns of New Zealanders, comes down heavily in favour of placing human genes and their replicas into other species. Of particular concern has been the lack of awareness of the body of scientific research and publications that question the merit and safety of transgenic research and international concerns with biosafety.

"Maori are deeply concerned about the use of human genes and the implications of using human genes in other species but this is given scant mention in the Bioethics Council report. The Council presents a view that the public is happy with the fact that human genes are being placed into other species if it is potentially beneficial for human health. However, that has not been our experience in terms of research with Maori communities in regard to issues of genetic engineering. There is a significant body of evidence that shows Maori concerns over the development of the technologies, what constitutes safe medical research and where health funding should be allocated." says Glenis Philip-Barbara, a Ngati Porou researcher.

Ms Philip-Barbara is one of a number of Maori researchers who have undertaken research in Maori communities on genetic engineering. More recently Dr Paul Reynolds, whose PhD research examines the biotechnology industry in New Zealand, says that there has been a consistency of opposition by Maori to the developments of the technologies. "From 1998 until 2003, Maori have spoken to the Royal Commission, submission processes, researchers, Ministry consultations, numerous forum including the Bioethics Council. The dialogue process that the Council undertook has failed to reflect what Maori said to them. They have whitewashed their concerns. In Maori assessments, a number of factors are being weighed up including whanau and environmental wellbeing, cultural factors, safety of experimentation, value for money spent, accountability, access, usage of public funds". Both Ms Philip-Barbara and Dr Reynolds, attended Council dialogue sessions, and spoke to others who attended meetings, said that "People who attended were very clear about their views and it was not in support of human genes being put into other species because of their views about the sanctity of whakapapa". Ms Philip-Barbara says that "the Gisborne participation was strong and clear in its views but there is zero in the Report that adequately reflects what Maori participants have said. Once again it seems we have been sidelined."

Talking about his recent Ph.D research which was completed in Canada, Dr Reynolds says his research showed that "significant amounts of taxpayer funding is being channelled into areas that manage the perception of the public to biotechnologies in New Zealand. Managing perception is clearly what the Council seems to be about." This he states raises a critical issue in regards to the representation of Maori views on biotechnology. "A part of managing perception seems to be the marginalisation of Maori views in the report. Supposed dialogue and consultation has been extremely useful as part of a range of ways of managing public perceptions. However these processes have been extremely limited and still fail to engage the critical questions about whether the science has long term risks and if in fact there are ever going to be any medical cures. The jury is still out on both these questions, but the council is supporting the continuance of a science that remains unpredictable and therefore potentially unsafe for future generations." Further more Dr Reynolds states that the support for the biotechnology industry is based more on economic gain than it is about health. "Why are we spending a fortune on this? Who benefits? Currently there is huge funding being allocated into an arena that is totally experimental with no specific outcomes for health or wellbeing of people. So far the need for all this research is based on unfounded assumptions about health hearsay and is sucking up a significant allocation of research funds across a number of areas, including research and development, and health funds, not to mention the funding spent on the activity of dialogue such as that undertaken by the Council."

Conflict of interest has also been ignored in the process. What is interesting to note is that human genes have already been put into cows in research undertaken by Crown entity, AgResearch, at Waikato. The 1998 transgenic cow application, which set a precedent for New Zealand, was approved in 2002 by a special ERMA committee chaired by Jill White. "Jill White is now the current Chair of the Bioethics Council so the public will need to ask why a number of Maori seem to be being attacked for conflicts of interest in the public arena but these conflicts seem to be overlooked" say Dr Reynolds. While the Council had a significant Maori membership earlier this year, including Sir Paul Reeves, Dr Gary Hook, Dr Cherryl Smith this has changed and it appears that Maori concerns have now become tokenism.

- Dr Paul Reynolds
Postdoctoral Fellow
Nga Pae o te Maramatanga
The National Institute of Research Excellence for Maori Development and
Advancement
Hosted by The University of Auckland

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