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A look at the controversial Human Genome Project recounts the struggle to launch the multi-billion-dollar, ten- to twenty-year project and relies on primary documents gathered as events unfolded to unravel the tangled scientific and political threads of the story.

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I originally read this book for a college course about the ethics of genetics. It is something every person in the biological or natural sciences should read, but it is also helpful for anyone interested in genetics. It is primarily about the politics and ethics which surround all genetic issues. Cook-Deegan explains the rudiments of genetics in a very easy to understand manner, and then launches into an in-depth examination of the politics of genetics. More goes on behind the scenes of biological science than you would ever believe. In the coming years genetics and the ethical issues surrounding genetics are going to become very important in medicine, pharmaceutical research, and criminal forensics. No longer just a class for science majors, genetics may well enter your life in ways you never expected. Cook-Deegan's book can definately educate as well as entertain.
October 13, 2000

Human Genes should not be patented!

November, 1997 "The Gene Wars: Science, Politics, and the Human Genome" by Robert Cook-Deegan (W.W. Norton & Company, New York, 1994) This is a fascinating book about the politics of the human genome project. Although I was familiar with much of the history of this project, it was good to read an organized, "insider's view". The author worked for the U.S. congressional Office of Technology Assessment (OTA) during the formative years of the project. The book starts out with a description of the horrors of Alzheimer's disease, and then goes on to explain the significance of the human genome project in terms of understanding human disease. With the significance of the work firmly established, the genesis of the human genome project is described - apparently the idea of sequencing the entire DNA sequence for a "single" human being was first realistically proposed by three different groups, working independently of each other, all about the same time (within a few months) during 1985. These groups all realized that the technology was quickly becoming available to achieve such a daunting task. To give you an idea of the difficulty of the task - imagine that you were to start reading the human genome, at one base every second (the genetic information coding for you (and all other animals and plants you see) is written down in a simple "text", just like this article; in the language of DNA, there are only four "letters" - G, A, T, and C) - to read the DNA sequence of a human being would take about 140 years - if you were to read one base a second, 24 hours a day, non-stop. The (frustrating) fact is that you really would not know anything about the person when you were done, except that they most likely had died (and had to pay taxes!) several years before their DNA sequence had been read. Obviously one needs computers to handle this kind of information. The best place for computers was at the National Laboratories in the U.S. Southwest - mainly Lawrence Livermore & Los Alamos National Laboratories. I had always thought that this was why the national labs had got involved in the genome project. To be honest, I had often wondered how the Department of Energy wound up financing the project - I was surprised to learn that in fact that one of the first groups to propose sequencing the human genome was from Los Alamos - in part kind of a "from nuclear bombs to plowshares" type of philosophy. But in fact, there was a bit more of a sinister twist to this plot - the U.S. military was trying to study the effects of the atomic blasts on the Japanese survivors from World War II. Furthermore I know (from personal conversations with scientists at Los Alamos during this time) that the U.S. military was seriously operating under Ronald Reagon's philosophy of fighting and surviving (?) a nuclear war. The result of all of this was that the human genome project was funded initially by the Department of Energy; basically it was a military project to ensure jobs for unemployed bomb makers (according to some of the critics at the time). The first "gene wars" aspect of this has to do with the politics of government funding. Really, the most logical place to fund this research would be the National Institute of Health (NIH), but many people were still feeling the pinch of less money for basic research at the time, and were quite afraid that the human genome project would steal money from basic grants. Furthermore, many scientists observed that, since roughly 98% of the human was "junk" (that is, it doesn't code for proteins), it would be a huge waste of money. Indeed, to try and use present or "old technology" to sequence the human genome WOULD be stupid - but the genome project was all about heavily investing in technology to improve speed of sequencing. In the 1960's, it was a very significant achievement to sequence 23 nucleotides (the equivalent of being able to read maybe 3 words in a sentence). In 1977, Fred Sanger (funded by the MRC in England) developed a sequencing technology that made it possible to read the entire sequence of a bacterial virus (about 5400 nucleotides long, or roughly the same as being able to read a short paragraph). This was significant enough to merit a Nobel Prize for a Nobel Prize, shared with two Harvard scientists who also developed a different (slower) method for sequencing. By 1985, this technique had begun to be automated, such that a MACHINE could read the sequence automatically - it now was possible to routinely sequence more than 10,000 nucleotides (this would be like being able to read a full page - with enough work it wouldn't be too difficult to put together an entire chapter). However, in 1985 the human genome project still was a pretty daunting task - at the present rate of sequencing, Jim Watson estimated that it would take about a thousand years to sequence the entire human genome!! So the human genome project was set up to invest heavily in technology - in fact when the program finally was officially launched in October of 1990, it was a 20 year project, with the first 10 years invested mostly into improved methods of sequencing, with most of the actual sequencing of the genome being done in the last few years. In addition, the genomes of smaller organisms was set up as intermediary goal posts along the road. In the past two years, we have already seen the realization of the early goals; the complete sequence for the genomes of more than a dozen bacteria are now available for research and comparison, and the genome of the first "animal" (simple yeast) was published earlier this year (1997). Soon to come will be the first worm (nematode), first plant, and first insect. It will probably be another 4 or 5 years before the first mammalian genomes become available. The human genome project is set up initially to run from 1990 through the year 2010. The annual budget is roughly U.S. $200,000,000 per year (!) - of which about $120,000,000 is given to the NIH, and about $80,000,000 is given to the DOE. At the suggestion of the first Director of the Human Genome project (Jim Watson), about 5% of the budget is invested into "ethical considerations of the human genome sequencing project". As Cook-Deegan points out, there are many ethical considerations to consider - in fact, a large part of the reason Jim Watson resigned as director had to do with his strong objections to the U.S. government policy of trying to patent DNA sequences. Although Cook-Deegan takes a more middle of the road approach, and tries to explain why the government wants to regain money invested in research (which I think this SOUNDS fair enough...), I guess I really tend to agree with Watson. Imagine. You are living a thousand years in the future, and no one speaks English anymore - in fact, through years of neglect, it is almost a forgotten language. Now you learn to read, and find one of Shakespeare's books. Suppose you are the first person to read through part (not all, even) of one of his plays - does this mean that YOU have to right to charge anyone else royalties who wants to read this or use it in the future? This is in fact what was at issue at the "bioearth" summit in Brazil in 1992 - the U.S. did not want to sign an agreement forbidding the patenting of DNA sequences, despite the agreement amongst all the other countries in the world. I personally have no problems with patents - I think they are wonderful, provided they are for something that you have created. But I do have serious problems with patenting DNA sequences - because this is just merely reading a text that someone else (God?) has already written. In summary, this book is a good history of the beginning of the Human Genome project. For me, it was fun to see much fruit of this project in my own research. I think this is an essential reading for anyone who wants to understand what the human genome project is all about, in terms not only of the science, but also the development
November 13, 1997

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