Ninth Global Forum on Bioethics in Research

May I begin by greeting everyone in the languages of the realm of New Zealand, in English, Maori, Cook Island Maori, Niuean, Tokelauan and New Zealand Sign Language.  Greetings, Kia Ora, Kia Orana, Fakalofa Lahi Atu, Taloha Ni and as it is the morning (Sign)

May I specifically greet you: Professor Graeme Fraser and Dr Robin Olds, Chair and Chief Executive respectively of the Health Research Council of New Zealand; Dr Clive Aspin, Chair of the Scientific Programme Committee; Representatives from Ngati Whatua; international delegates; Distinguished Guests otherwise; Ladies and Gentlemen.

My wife Susan and I accepted, with pleasure, the invitation to be here this morning to attend the opening of the Ninth Global Forum on Bioethics in Research.

I have been asked to formally open the conference, and just before doing so, I would like to speak to the theme of the conference.  I have been interested to receive and read your agenda because of a long held view that long after the memory of what transpires here will have receded in memories, the agenda will continue to be evidence of the leading edge of issues as perceived by your Conference organisers.

I would first like to welcome GFBR 9 delegates from throughout the world to our country.  I hope that if time permits, as well as gaining the opportunity to gain knowledge and discuss issues relating to this conference, that you may also will have some opportunity to see more of its beauty and its people in places beyond this city.

Secondly, I wish to congratulate the Health Research Council of New Zealand (Te Kaunihera Rangahau Hauora o Aotearoa) on hosting this gathering.  In championing the integrity of the health research environment in New Zealand, it follows that the promotion and maintenance of the highest ethical standards is a key notion for the Council.  This makes the HRC a highly appropriate organisation to host the ninth Global Forum for this grouping.

That a major conference should address the ethics of research involving indigenous peoples and vulnerable populations is timely for a number of reasons.

In 1999, UNESCO, in its Declaration on Science and the Use of Scientific Knowledge, noted the significance of indigenous knowledge.  It said, and I quote:

"Traditional and local knowledge systems, as dynamic expressions of perceiving and understanding the world, can make, and historically have made, a valuable contribution to science and technology, and that there is a need to preserve, protect, research and promote this cultural heritage and empirical knowledge..."

I am pleased to say, as a New Zealander, that our country has come to place increasing store on the contribution of New Zealand's indigenous people.  UNESCO then placed a significant rider on the use of this, and indeed all scientific knowledge by stating that:

"The nations and the scientists of the world are called upon to acknowledge the urgency of using knowledge from all fields of science in a responsible manner to address human needs and aspirations without misusing this knowledge."

The UNESCO Declaration pinpoints a number of the complexities of ethics in this area.  How compatible is the preservation and protection of indigenous knowledge with research and its promotion?  Likewise, where exactly does "addressing human needs and aspirations" end and the "misusing knowledge" begin?  If the ends are good, does it justify means that could see an indigenous culture fundamentally changed or undermined? 

These and many other perplexing ethical questions are being placed into stark relief by the speed with which our world is changing. Faced by globalisation, cultural traditions and identities of indigenous peoples and communities are being challenged by rapid social, environmental, economic and political change.

For some people in this part of the world, the Pacific, one of the most dramatic of these changes, climate change, could literally see their lands disappear beneath the waves. The implications of such a catastrophe continue to perplex scientists, environmentalists, politicians and indigenous peoples.  I recently welcomed to New Zealand the President of Pacific microstate to the north of Fiji, Kiribati, HE Anote Tong, with a formal state welcome at Government House in Auckland.  Like many Pacific people he is a person well at home in our country, in his case because of time spent here whilst a student at University in Christchurch.  It became clear from my discussions with him that Kiribati succumbing to rise of sea level was an issue that weighed heavily on his country's shoulders.

Due to colonial histories, many indigenous peoples and communities are not necessarily well placed to respond to these changes.  Very often and regrettably, western science has often depicted these people as "objects" to be studied, rather than as human beings with the same human rights and aspirations as everyone else.

Hollywood, for example, has immortalised western scientists in characters such as the swashbuckling archaeologist Indiana Jones.   The archetypal archaeologist is often depicted as stealing precious or sacred artefacts, invariably bejewelled idols, from an indigenous community, usually to sell to a museum or more likely, a wealthy collector.  The Indiana Jones image is an exaggerated stereotype, but sadly one that is based on much reality. 

And it is not just artefacts that have been taken or threatened. As the UNESCO Declaration noted, indigenous peoples are also the holders of considerable knowledge, often passed down from one generation to another through oral traditions. 

Attempts to catalogue this knowledge, even when the researcher's intentions may have been benevolent or benign, have encountered difficulties.  There are accounts of researchers failing to respect traditional customs resulting in knowledge being put to uses that was not intended.  Likewise, there have been occasions where traditional values and cultures have been misrepresented because the researchers have failed or recognise their own values and world view.

This interaction between western science and indigenous peoples was captured well by New Zealand academic Dr Linda Tuhiwai Smith, and now member of the Health Research Council, in her groundbreaking and widely cited 1999 book, Decolonising Methodologies: Research and Indigenous Peoples. As she noted:

"'Research' is probably one of the dirtiest words in the indigenous world's vocabulary.  When mentioned in many indigenous contexts, it stirs up silence, it conjures up bad memories, it raises a smile that is knowing and distrustful."

But it doesn't have to be this way and indeed, there are many examples of successful research partnerships between researchers and indigenous peoples.  They involve extensive consultation and  active involvement of indigenous peoples in setting the parameters and undertaking the research. 

There are also many examples where research undertaken by indigenous peoples using western technology that has enhanced, rather than detracted from the value of indigenous knowledge.  In New Zealand, for example, Maori have used GPS technology to accurately catalogue and map wahi tapu or sacred sites.  This is not only of benefit to Maori, but also the wider community by ensuring that the location of these sites is appropriately considered in local authority planning decisions and land use applications.

I note that your conference is not only examining the ethics of research involving indigenous peoples but also other vulnerable communities.  One such vulnerable group of people are those living with mental illness.  They are a group of people that, despite recent campaigns, continue to be stigmatised and suffer from discrimination.

Prior to my appointment as Governor-General in August 2006, I was involved for 16 months in chairing the work of the Confidential Forum for Former In Patients of Psychiatric Hospitals.  This represented an approach to see a "truth and reconciliation" element being brought into the aftermath of hospitalisation for psychiatric illness and saw some 500 people come forward and relate their accounts to the Forum - as patients or family members of patients, or staff.

Further insight to these issues came in July this year when I had the task of launching New Zealand's Mental Health Foundation's latest research report, Fighting Shadows: Self-Stigma And Mental Illness (Whawhai atu te Whakama Hihira).  This report explores the impact of self-stigma on those living with mental illnesses.  What was refreshing about the research was that it not only outlined important data and findings, but that it laid emphasis on and ensured that the voices of those with mental illnesses were heard.

Quotes from those living with a mental illness showed that behind the findings and the numbers are real people, whose lives may have been crushed by their illness and have also been kept there by the weight of the negative attitudes carried on their shoulders.

In conclusion, I wish you well with your deliberations and discussions.  The issues being discussed are difficult and perplexing.  But I urge you onward despite the difficulties, because many things are possible.  There is a Maori proverb that makes this point well:

He nui maunga e kore e taea te whakaneke, he nui ngaru moana m te ihu o te waka e whi.

This, as many people in this room will know, translates as: Whilst a great mountain cannot be moved, a giant wave can be broken by the canoe's prow.

The same kind of point is taken up in one of the streams in your agenda later today where the question is asked "Is it really too hard?" On the heartening note of welcoming you, of wishing you well, and of saying to your community (as one more encourager) "No, what you are discussing is never too hard!" , it gives me great pleasure to declare the ninth Global Forum on Bioethics on Research officially open.

And with that, I will close in New Zealand's first language Maori, offering everyone greetings and wishing everyone good health and fortitude in your endeavours.  No reira, tena koutou, tena koutou, kia ora, kia kaha, tena koutou katoa.