DOES it matter who owns the rights to the raw information in our genes? Do we care whether scientists have the freedom to explore the human genome? Should we be concerned if the knowledge and use of the sequence of bases in our DNA are controlled by private companies?
I say it matters a great deal. We must care. We should be concerned. The potential exists for private companies to set themselves up as gatekeepers to information on the human genome. If private efforts effectively restrict access to the 3 billion base pairs of the human genome, then the pace of research into genetic disorders will be slowed, and costs associated with developing new treatments will almost certainly rise.
Private companies have already filed thousands of patent applications for thousands of human DNA sequences, and in most cases there is little understanding of their biological function. If such patents are granted, researchers in both the public and private sectors may be forced to pay to use this genetic information, if they can get it at all.
Advertisement
If it weren鈥檛 for a parallel international effort-funded by governments and charities-to sequence the entire genome, the situation would be even more serious. This effort-of which I am a part-is known as the Human Genome Project, and it is committed to making raw gene-sequence information freely available to medical scientists worldwide. Every day, we post our latest data on the Internet. This means that scientists are using the information today without legal restriction or financial obligation.
Two-thirds of the genome is already available in 鈥渇irst draft鈥� form, with 10 per cent more added every month. As soon as the draft stage is completed we shall go on to fill the remaining gaps to produce the highest possible quality product. An additional benefit of making raw sequence data instantly available is that the information then becomes unpatentable: once in the public domain, it cannot be patented by anyone else.
Many people ask, why should this information be available for free? After all, these days most of us have to pay for information that may lead to commercial applications, such as market research data, material stored in archives, or financial information. But the genome is different. It鈥檚 different for a number of reasons. First and foremost, it is intrinsically a part of every human being, a common heritage in which we should all share equally.
Sickness or health
Hidden in this common heritage is the knowledge that will lead to all kinds of exciting possibilities in health care and in the treatment of disease-such as drugs without side effects, or medicines that are tailor-made for specific groups of patients. But above all, it鈥檚 the raw material for thousands of inspired minds who are writing the complete workshop manual for the human body. They will take us to achievements that we cannot yet conceive.
How else is the genome different from other products of value? A patent is usually granted on an invention, rather than a discovery. An idea must be original, it should not occur in nature and it should have a definite use. Most sequences of human DNA do not satisfy any of these criteria. Genes are discovered, they occur in nature and, in most cases, we have only a vague idea of what they do.
In time we will understand them fully. And that, too, is part of the problem. Companies that file patent applications without specific knowledge of the function of gene sequences often file for what is known as 鈥渂road鈥� protection that could cover any number of possible functions. If such a patent is granted, the company will own the rights to use the information, even if someone other than the patent holder finds out the function of that gene.
Don鈥檛 get me wrong. I鈥檓 not against patenting. Far from it. 快猫短视频s and inventors must have protection for the novel applications that are the products of their hard work and imagination. That鈥檚 why we have intellectual property protection on technological processes as well as manufactured products, including books and music. But we don鈥檛 have patents on the letters of an alphabet used to write the books, or the notes used to compose the music. Patenting sequences of human genes amounts to the same thing. Let us patent the drugs which emerge as a result of the human genetic alphabet, but not the letters themselves.
In a recent statement, US President Bill Clinton and Britain鈥檚 Prime Minister Tony Blair said that 鈥渞aw fundamental data on the human genome, including the human DNA sequence and its variations, should be made freely available to scientists everywhere鈥�. The statement, carefully prepared over a period of several months, expresses what a majority of people want, and will stimulate public discussion about these very complex issues.
So what will happen next?
It is now well known that the Human Genome Project made an effort to collaborate with one of the private genome-sequencing companies, Celera Genomics in the US. This effort failed because of a fundamental disagreement over the rights to the merged product. In return for collaboration, the company wanted exclusive rights for five years over how information from the human genome would be distributed.
And there鈥檚 the rub-and the reason the Human Genome Project could not agree. There is little point in making the data public if scientists are not allowed to modify, add to and pass it on to their colleagues. Biology is information-rich and the free manipulation of databases in this way (an activity known as bioinformatics) will become more and more important in the future. Moreover, private interests should not be able to restrain future uses of public data. Indeed, it is the sharing of basic information that allows science to progress.
But whatever happens, the public and charity-funded Human Genome Project is committed to achieving complete, free and unrestricted access to information on the human genome-public ownership of the genetic building blocks of human life.