Director of Institute of Medical Research Replies to Allegations by PNG Writer, Dominic Sengi
from 'Viewpoint' Uni Tavur (Journalism student newpaper, UPNG), 23 February 1996
I am responding to the article by Dominic Sengi entitled "The challenge of the Hagahai blood saga" (Viewpoint, Uni Tavur August 4, 1995), which I have just seen. I strongly support investigative journalism and I strongly oppose exploitation of people by governments and authorities-especially forms of neocolonialism which exploit people living in developing countries.
I am not sure that Mr Sengi has understood all the biological issues involved in the Hagahai case, but I am concemed that he is hitting out wildly at a target which proves to be the wrong one for his purpose.
I believe that investigative journalism should seek to ferret out the truth and should be satisfied with nothing but the truth.
Scientists in a similar way seek to unravel the truth of the natural world. In neither enterprise is it sufficient merely to have a good story to tell.
There has been a lot of confusion on this matter, some involving human genetics, the Human Genome Project and the Human Genome Diversity Project. The Hagahai issue has nothing to do with any of these.
It concerns a virus called HTLV-1 This virus causes a form of cancer and a form of paralysis in many countries of the world.
These diseases are quite rare but are nevertheless important because they may be spread through blood transfusion (in this respect they are like AIDS).
We have known for some time that the virus infection is common in Papua New Guinea but the diseases seem to be completely absent.
After a lot of effort the virus was isolated through collaboration with colleagues at the National Institutes of Health in the United States. This discovery revealed that the HTLV-1 virus in PNG is a variant of the cosmopolitan virus, which may explain why it does not cause disease here.
The variant has also been found in the Solomon Islands and has therefore been called the Melanesian variant.
The likelihood of any commercial benefit from this discovery is very slight, but it could conceivably be used to develop a test for the Melanesian HTLV-1 variant virus or a vaccine against the worldwide cosmopolitan strain.
On the basis of these remote possibilities, following the instructions of the US Government to their scientists at the National Institutes of Health regarding patents, our colleagues filed a patent for the genetic information they had discovered about the virus.
Otherwise all profit, if any commercial development did subsequently arise, would go to the commercial company which exploited the discovery.
Since the virus grows only in human T Iymphocytes (which is why it is called HTLV) it had to be deposited in a human cell line with the American Type Culture Collection, which makes it available for anyone who wishes to use it for scientific or commercial purposes.
Since the original isolate came from a Hagahai man in PNG the Hagahai were mentioned in the patent application. The other reason for mentioning the Hagahai was to ensure they would benefit if in the remote future some commercial development arose from this discovery.
So, despite what exploitation may take place around the world, in this particularly case the rights of the Hagahai were specifically safe-guarded.
Since the patent refers to the virus it is not human genetic information which is being patented. However, the patenting of any biological information raises many complex issues. In some places governments allow it, indeed encourage it.
There is a need for an international review of the patenting of biological information, so that the ethical, legal and economic issues can be addressed and a common code of practice agreed upon.
Papua New Guinea should begin to define its position on these questions and to develop its own policy. The most emotive aspects of these issues relate to human biological information, but the more practical ones concern plants and animals-particularly those of the forest and sea.
These we have in abundance. They should be shared world-wide; but if they lead to useful products, the "state or origin" should benefit appropriately.
In the Hagahai case, given that the patent application was being made in the US it was better, I believe, to have made the Hagahai part of it than to have taken the ethical stance not to be involved and to have allowed all the rights to have resided in the United States.
The questions raised by your Viewpoint article are important and of wide application.
However, in the sepcific saga of the virus derived from the blood of a Hagahai man the facts indicate that no exploitation has taken place, and moreover, that scientists concerned share essentially the same ethical view of these matters as your Viewpoint author, Mr Sengi.