A proposal by a Melbourne based biotechnology company, Autogen, to establish a database of genetic information on the population of Tonga in the South Pacific is floundering after opposition from church and pro-democracy groups.
In November 2000 Autogen triumphantly announced to the Australian Stock Exchange that it had signed an agreement with the Tongan health ministry to undertake a project “aimed at identifying genes that cause common diseases using the unique population resources in the Kingdom of Tonga.”
The project is the product of an alliance between Autogen and Merck Lipha, a subsidiary of the German pharmaceutical giant Merck. Merck holds a 15% stake in Autogen and is funding a six year research programme to identify genes associated with obesity and diabetes.
Autogen's chairman and largest shareholder, Joseph Gutnick, is a confidante of former prime minister of Israel, Benjamin Netanyahu, while another director is former Australian Labor party prime minister, Bob Hawke.
While the company's board boasts some political heavy hitters, it failed to anticipate that the secretly negotiated agreement would encounter opposition from those advocating a more accountable government in the Pacific's only remaining monarchy. The Director of the Tonga Human Rights and Democracy Movement, Lopeti Senituli, objected to being presented with a fait accompli: “We expressed opposition to it primarily because there was no public discussion.”
Autogen's statement on ethics emphasised prior informed consent of individual volunteers but remained mute on the traditional Tongan role of the extended family in decision making. “We want to also add the prior informed consent of the extended family . . . because what we are talking about is not only the genetic information from that one individual but the genetic material from that extended family,” Mr Senituli said.
At the request of Mr Senituli, the professor of health law at Boston University School of Public Health, Dr George Annas, reviewed Autogen's ethics policy. In correspondence he described it as “unacceptably vague” and having “no enforcement mechanism whatsoever.”
Nor did Autogen anticipate that its proposal would spark regional opposition. In March 2001 a major conference on bioethics hosted by churches from the Pacific resolved that no government should sign agreements before there had been extensive public consultation. They also objected to the conversion of God-created “life-forms, their molecules or parts into corporate property through patent monopolies.”
The chief scientific officer of Autogen, Professor Greg Collier, insisted that the company had no immediate plans for research work in Tonga and was concentrating its resources in the Australian state of Tasmania: “In Tasmania it is easier for us to find families and work with them more easily.”
Mr Senituli doubts the company has really retreated: “What intrigues us is why Autogen has not removed the reference to Tonga from its website—why has the stock exchange not been told? This is what worries us.”
Professor Collier has no intention of removing the website reference to the Tonga proposal or of issuing a clarifying statement to the Australian Stock Exchange pronouncing the proposal dead: “There is no changing that… it would look more like to me that we were covering our tracks.”
Figure.
PA
Autogen's emphasis on the prior consent of individuals did not take into account the role of the extended family in Tonga