Who will control the gene code?
BY ROISIN DE ROSA
Dr. John Sulston, who has mapped a third of the human genome (the gene map of the human body), received an honorary degree from Trinity College, Dublin, last Friday, 7 July. He also delivered a public lecture in the university to explain his groundbreaking work.
On the screen in the darkened lecture theatre blazed the history of humanity, from the time when humanity believed itself divine in the image of his Gods. Then there came the knowledge (with Galileo, Kepler) that we weren't after all even the centre of the universe. Darwin told us that we were mere animals. And this year, scientists can at last tell us that we are machines and that they know how we get put together. And soon, we will put them together. We can already improve the ones that got put together on automatic pilot, carelessly, often thoughtlessly, at conception.
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The fate of many human beings resides in the outcome of Sulston's battle to preserve the gene sequences and their interaction free, in the public domain.
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Sulston, white-haired, witty, dry, quiet, even cautious, everyone's caricature of a scientist, got into biochemistry by default: ``I never liked book work. What I actually liked was being in the lab and playing with the toys. I just played and played.''
d the toys became computers the size of football pitches, with 12 terabytes of RAM (that's an awful lot of memory), to deal with the 22,000 segments of the human genome, each one 150,000 letters long. These letters, termed ATGC, discovered 50 years ago by James Watson and Francis Crick, are the chemical components of DNA, the genetic blueprint for all human life, present in each of the human body's 75 to 100 trillion cells. ``We're writing the dictionary of the genome, the code of instructions present in each of these cells,'' said Sulston. The sequence of letters would fill 500,000 pages of a telephone directory.
``Think of the human genome as the book of life,'' he explained. ``We are about to read the first chapter, as important an accomplishment as discovering that the Earth goes round the Sun or that we are descended from apes.''
The philosophical implications are boundless, that man (sometime in this century) could make his own brain, in theory, at least! Whatever about these implications, the potential, even over the coming decade, for medicine and the treatment of many diseases is huge: cancer, heart disease, Aids, haemophilia, arthritis, schizophrenia, and a thousand genetic conditions, including Alzheimer's, Multiple Sclerosis, Down's syndrome, Huntingdon's Chorea, and cystic fibrosis. Designer drugs, suited to the patient's particular genome, will be with us in a decade or so - designer babies in 50 years or so.
d then, of course, comes the question: who designs them, and who gets paid for them?
The lights go back on in the lecture theatre, and from the brilliance of a shining intellectual achievement, we are back in the real world and the battle for control.
In the real world there are two rival projects in a mad race to map the human genetic code. There is Dr. Sulston, of the non-profit Human Genome Project (HGP), who is head of an international team of scientists at the Sanger Centre in Cambridge, England, financed by public funding and by the Welcome Foundation Trust. The HGP makes its data on sequencing the genome public available every evening, free to all, on the internet.
The other is Dr. Craig Ventner and his Celera Genomics, a private company founded in May 1998. He plans to put his data on a commercial database, available only to subscribers. Celera has already laid claim to 20,000 provisional patent rights, although the interaction of the genes he has mapped may as yet be quite unknown.
Venter's methodology is different. His method of sequencing genes, called the `whole shotgun method', maps tiny fragments of the whole. Without sequencing the whole genome, this method can identify genes, without necessarily understanding how they work or their interrelation.
But as these `patented genes' come to be found to cause common inherited diseases, their patented sequencing will represent a very large revenue stream for Venter and the pharmaceutical concerns that buy the rights to develop each patent. Wealth beyond even the dreams of Microsoft's Bill Gates is on offer, as companies carve themselves monopolies from the code of human life.
The first battles have already begun. Researchers recently found the pathway, or docking site, known as the CCR5 receptor, by which the AIDS virus enters the human cell. Block this doorway and potentially you cure a disease that has lethally infected 30 million people. But the gene CCR5 is owned by Human Genomic Sciences Inc. (HGS), a former collaborator with Venter, which is demanding royalties and license fees from every drug company that wants to work with CCR5. HGS admits it had no idea of the gene's function in relation to AIDS when it first made application for the patent. Celera's declared aim is to become the monopoly source of genomic information.
Sulston, by contrast, says that ``global capitalism is raping the earth, it's raping us. If it gets complete control of the human genome, that is very bad news indeed. That is something we should fight against.'' He is committed to ensuring that the data remains in the public domain.
On 14 March this year, Tony Blair and Bill Clinton made a joint statement that they would like to see ``unencumbered access'' to the human genome. Celera's share price fell from $225 through the floor to $64, representing a loss of $6.8 billion on the value of stock issued to raise $1 billion last February. On 27 June, Clinton and Blair jointly welcomed the mapping of the human genetic code, as both Celera Genomics and Sulston's HGP jointly announced their achievement.
The contradiction in President Clinton's statement ``that we are learning the language in which God created life'', is as apparent as the fiction that Celera and HGP have ended their conflict. The fate of many human beings resides in the outcome of Sulston's battle to preserve the gene sequences and their interaction free, in the public domain.
Dr. Sulston was asked about the possibilities of his research giving longevity to human beings. ``People,'' he said, ``had had enough difficulty coming terms with our not being the centre of the universe. They still do. I don't think I could come to terms with humans being machines. But I place my trust in coming generations to solve all these, to us, unanswerable questions which this knowledge will place in our hands.'' His enthusiasm for human beings and their ability to deal with these questions and his faith that informed discussion will allow them to resolve these issues, was boundless.
Hopefully, his vision will prevail. But never has there been a battle between capital and public ownership that is so vital. The copyright on `God's book' is at stake.
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