The gene hunters
ual patients, the database that they would establish would in effect be pretty close to complete given the limited size of the population, the high rate of diseases such as diabetes and intermarriage over the centuries.
The first the Tongan people heard of the agreement regarding genetic research on their blood was through media reports from Australia on 18 November 2000. Concerned fellow activists from as far afield as Melbourne, London, Geneva and Suva contacted us almost simultaneously at the Tonga Human Rights and Democracy Movement (THRDM) wondering why we had not alerted them. We managed to convince them that we were as surprised as they were. From Melbourne came a copy of an article from the local _Herald Sun_ with the headline ‘Gutnick Buys Rights to Islanders’ Genes’, outlining how Australian business magnate Joseph Gutnick’s company Autogen Limited had signed an agreement with the Tongan Government to conduct genetic research on the Tongan people. The article also mentions that, apart from interests in mining and owning a football team, Gutnick is a confidant of the former Israeli Prime Minister Binyamin Netanyahu and that former Australian Prime Minister Bob Hawke sits on Autogen’s Board. (Hawke has since resigned.)
Our immediate concern was to verify the media reports. During that same week I was a co-panellist with a senior member of the Prime Minister’s Office staff in a seminar on Human Rights and Development. The discussions inevitably led to Autogen and my co-panellist was absolutely sure that no agreement had been sanctioned by the Prime Minister nor by His Majesty’s Government.
...we argued that in Tonga gossip is lethal and travels faster than the speed of sound
Tonga is the only surviving kingdom in the Pacific. It has survived primarily because it was never colonized, and the Tongan people today still have a deep reverence for their monarch His Majesty King Taufa’ahau Tupou IV.
Tonga’s population today is approximately 100,000 with another 100,000 living (legally or otherwise) in Australia, Aotearoa/New Zealand and the US. We are a constitutional monarchy with a Legislative Assembly of 30 members, only 9 of whom are directly elected. The day-to-day running of government is in the hands of a Prime Minister and a Cabinet of Ministers, all of whom are handpicked by His Majesty.
The denial by the Prime Minister’s Office of knowledge of the Autogen agreement had two major implications. First it allayed fears that our government may have pulled another ‘fast one’ on us. In the late 1980s His Majesty’s Cabinet sold Tongan passports to mainly Asian buyers without the knowledge of the public or approval of the Legislative Assembly. When Samuela ’Akilisi Pohiva, Secretary of the THRDM, sued the Government for violating the country’s constitution, the King convened an emergency session of the Legislative Assembly in January 1991 and had the Constitution amended so that the passport sales became retrospectively legal and constitutional. The second implication was that if Autogen’s public announcement of the agreement via the Australian media was intended to coerce the Tongan Government into fast-tracking their proposal or railroading local opposition it had the opposite effect. Tongans were incensed that they knew nothing about the agreement and its implications beforehand.
The Tonga Human Rights and Democracy Movement condemned the agreement because its implications had never been discussed publicly. We also said: ‘What is involved is the sanctified blood of human beings and not the genetic make-up of our pigs (with all due respect), so there should have been prior public discussions…’
In response to the public outcry the Minister of Health was forced to admit that he and officials from his ministry were having ongoing discussions with Autogen, but denied having signed an agreement.
In subsequent statements we argued that in Tonga gossip is lethal and travels faster than the speed of sound. So if the research established, for example, that a certain family is genetically predisposed to dementia and such information leaked out, the children of that family would be refused bank loans, employment and insurance; no-one would want to marry them; they would become pariahs forever. In such a scenario, a person is reduced to their genetic make-up and their God-given dignity and rights become meaningless.
We urged the Tongan Government not to be blinded by what Autogen was offering. We said: ‘Existing international intellectual-property rights laws favour those with the technology, the expertise and the capital. We have none of these. All we have is the raw material – our blood. We should not sell our children’s blood so cheaply.’
Autogen had announced through the Australian Stock Exchange Office in Sydney that it had signed an agreement with Tonga’s Ministry of Health to establish a major research initiative aimed at identifying genes that cause common diseases such as diabetes using the ‘unique population resources of the Kingdom of Tonga’. The research would involve the collection of tissue samples and health data from consenting individual Tongans. Autogen would then use the information to identify disease-related genes with the aim of developing new drugs. In return Autogen agreed to provide annual research funding to Tonga’s Ministry of Health in addition to paying net royalties on revenues generated from any discoveries that are commercialized. Any new therapeutics developed from the research would be provided free of charge to the people of Tonga.
Dr Viliami Tangi, the Minister for Health, told me in January 2001 that his professional motivation was the high incidence of diabetes amongst the Tongan population – reportedly close to 14 per cent. His personal interest was sparked by his being physician to a Tongan family which had four members diagnosed with breast cancer, two of whom have died.
Joseph Gutnick on the other hand wasn’t too concerned with the human condition. In the Sydney announcement of 17 November 2000 he is quoted as saying: ‘The major new alliance with the Government of Tonga continues Autogen’s growth into a world leader in the field of gene discovery. Our substantial database of human DNA samples will now be complemented by the unique samples from Tonga and help to accelerate Autogen’s growth as a world-class biotechnology company.’ Autogen already claims 35 genes related to obesity and diabetes at various stages of patent protection on its website.
The motivation behind the industry itself is perhaps best summed up by Dr Loane Skeene of the University of Melbourne: ‘In years to come people will laugh at the idea of the same drug being prescribed for everyone with a particular condition... Doctors will no longer write prescriptions for a standard medication for each patient. They will consider the patient’s whole genome – the ‘list’ of his/her genetic information – deciding what treatment should be most effective for that patient.’ In order for this technology to come into existence it is necessary to identify the correlation between particular genes and the onset of diseases. This is the one important aim behind the creation of genetic databases of whole populations. Researchers can look at genetic data down several generations and then correlate them with other data that show which people develop a particular disease. Island populations such as Tonga’s are key and according to Autogen ‘its unique family structure and isolation of population together with the high prevalence of a variety of diseases represents a major resource for geneticists to identify genes that predispose people to those diseases’.
In March 2001, a Pacific regional consultation on bioethics was convened in Tonga bringing together church and community leaders from the Pacific region. They concluded that ‘all life-forms should be treated in a way that respects their intrinsic value as living generational manifestations of creation’ and ‘that scientific and commercial advances should not be allowed to proceed past the deliberations necessary to provide for their social, moral and ethical control’. The Consultation found that the best way to address lifestyle diseases such as diabetes should be through preventative measures – educating people to change their dietary habits and lifestyles.
####Issues of consent
We also opposed the Autogen agreement because it failed to look beyond informed individual consent. Tongan extended family groupings would have no say, even though the genetic material donated by individual members would reflect the entire extended family’s genetic make-up. Although Autogen stated that their research would not involve the whole Tongan population, only individual patients, the database that they would establish would in effect be pretty close to complete given the limited size of the population, the high rate of diseases such as diabetes and intermarriage over the centuries.
It was also our view that the benefits offered by Autogen were a drop in the ocean. The promised royalties from any new therapeutics and the provision of these free of charge to the Tongan people were, we felt, prefaced by a huge ‘if’. In contrast, Autogen would reap rewards from the moment they were able to say they had an ‘official’ agreement with the Tongan Government as they would immediately attract research and development capital from the giant pharmaceutical conglomerates.
Three centuries ago they came for sandalwood. Today the bastards are after our genes!
By August 2001, Tonga’s Ministry of Health and Autogen’s Chief Scientific Officer, Greg Collier, were saying that the agreement was dead.
In January 2002 I believe Autogen made one last attempt to revive its research agreement. It did this through an article carefully ‘planted’ in the regional media. Part of the article read, ‘Australian authorities are helping to tackle a growing health crisis in Tonga. The Government of the island country admits it is in the middle of a national health disaster caused by years of overeating and a taste for junk food… Ironically the country’s best chance of tackling diabetes is the one they are almost certain to refuse... Autogen has been attempting for more than a year to persuade the Tonga Government to allow it to construct a DNA database of the country’s 108,000 [sic] residents. One company source says that the data they want to collect would be vital in tackling diabetes and related illnesses. Officially, the proposal is being considered by a special government health, ethics and research committee but few believe it would ever go ahead.’
We used this to accuse the Ministry of Health of lying to us and to do a little ‘planting’ of our own by dropping hints to the media that perhaps Autogen could be attempting to disguise its genetic research agreement behind an already approved Australian Government funded health-aid project for the Tongan people. It had the desired effect.
Greg Collier finally contacted me on 11 March this year to declare that Autogen had ‘no intention of doing any research in Tonga in the future at all’ and that he would be ‘working over the next few weeks to remove all material concerning Tonga from our website’. Naturally we are overwhelmed but we have no illusions about the future. I have no doubt that the Autogens of the world have gone back to the drawing board to refine their strategies, polish up on their tactics and sweeten their offer whilst keeping a sharp eye out for another more vulnerable country or people. It is colonialism all over again. Three centuries ago they came for sandalwood. Today the bastards are after our genes!
In our opposition to the Autogen agreement we were also calling on His Majesty’s Government to put in place national legislation and regulations that would ensure that proposals like Autogen’s must first run the gauntlet of all legal, scientific, cultural and ethical requirements before they are even considered. On 13 February 2002, the Cabinet approved the establishment of the National Health Ethics and Research Committee. We are deeply moved. But there is no rest for the wicked. We still have to fight for civil society representation in this new Committee. That, as they say, is another story!
#STOP PRESS Joseph Gutnick has since resigned as executive chair and managing director of Autogen.