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The Common Thread/ Science, Politics, Ethics, and the Human

zeynep altun zaltun at aecom.yu.edu
Tue Apr 22 10:01:33 EST 2003

Hi everyone;

>>Below is the critique of J. Sulston's book "The Common Thread"  by 
>>Ed Regis that appeared in the New York Times Book Review a couple 
>>of weeks ago. Following that is Bob Herman's response to this 
>>critique that came out this week. I thought it would interest the 
>>worm scientists.

Zeynep Altun


>>March 16, 2003, Sunday
>>  Other People's Molecules
>>By Ed Regis
>>A Story of Science, Politics, Ethics,
>>and the Human Genome.
>>By John Sulston and Georgina Ferry.
>>Illustrated. 310 pp. Washington:
>>The Joseph Henry Press. $24.95.
>>IT has been 50 years since James Watson and Francis Crick 
>>discovered the double helix, the structure of DNA. And if all goes 
>>well, during this year the sequencing of the human genome -- the 
>>three-billion-unit molecular code for constructing a human being -- 
>>will be completed. ''The Common Thread,'' by John Sulston, the 
>>British scientist who directed a portion of the sequencing work, 
>>and Georgina Ferry, a science writer, is both an autobiography of 
>>Sulston and an account of his pitched battle with his longtime 
>>nemesis, Craig Venter. Venter was until recently the head of Celera 
>>Genomics, a private American company bent on beating everybody else 
>>to the genome.
>>Sulston regards Celera as the ''Microsoft of biology'' and Venter 
>>as the molecular-biological equivalent of Bill Gates. This is not 
>>meant as a compliment; Sulston at one point describes Venter as 
>>''the potential destroyer of all that we had worked for.'' So 
>>powerful a presence was Venter in molecular biology, as well as in 
>>Sulston's professional life, that Venter emerges as the driving 
>>force of the narrative.
>>Sulston started off rather unglamorously as a worm biologist, 
>>interested in the lowly nematode Caenorhabditis elegans, a tiny 
>>creature barely one-sixteenth of an inch from tip to tail. He did 
>>hands-on worm research, attended ''worm meetings'' and published 
>>his results in The Worm Breeders' Gazette, an informal newsletter 
>>of worm scientists. It must be read with attention by people beyond 
>>that circle, too; last year Sulston and two colleagues in worm 
>>science received the Nobel Prize in Physiology or Medicine for 
>>their work.
>>He got drawn into the genome project in 1987, when after four years 
>>of work on C. elegans he was invited to a conference in the United 
>>States to give a cost estimate of sequencing the entire human 
>>genome -- establishing the order of its molecular components. The 
>>Human Genome Project, eventually set up by the National Institutes 
>>of Health in Bethesda, Md., and headed by none other than Jim 
>>Watson himself, officially began in 1990, with a target completion 
>>date of 2005.
>>The work proceeded slowly, however, and by the end of 1994 less 
>>than 1 percent of the full genome had been sequenced and placed 
>>into public databases, while the scientists involved held a series 
>>of planning, strategy, timetable and organizational sessions. In 
>>1996, finally, at one such meeting in Bermuda, Sulston helped 
>>define an ''etiquette of sharing,'' an ideal that applied both to 
>>the division of sequencing labor among an international consortium 
>>of laboratories and to the release of data derived from them. 
>>Sulston's notion was to publish the information immediately and 
>>openly as it arrived, with no restrictions imposed upon use. ''Open 
>>access and early release mean that anyone in the worldwide 
>>biological community can use those data and turn them into 
>>biological understanding and ultimately into new inventions that 
>>can be patented,'' he says. ''But the sequence itself in its raw 
>>form when publicly released becomes unpatentable.''
>>In 1998, two years after the Bermuda meeting, Venter, a scientist 
>>formerly with the National Institute for Neurological Disorders and 
>>Stroke, announced that he had obtained private backing to form a 
>>company that would sequence the human genome by 2001. His claim had 
>>to be taken seriously because in 1995 one of his earlier 
>>enterprises, the Institute for Genomic Research (TIGR), had 
>>completed the world's first sequencing of a free-living organism, 
>>the disease-causing bacterium Haemophilus influenzae. Having now 
>>staked out the human genome as his own private turf, Venter, never 
>>a paragon of tact, suggested that the government-financed 
>>researchers confine themselves to sequencing the genome of the 
>>laboratory mouse. ''It was like asking them to walk into the sea 
>>and drown,'' Watson said later.
>>Venter's goal at Celera was to produce a quick and dirty version of 
>>the genome in an attempt to locate genes that drug companies and 
>>other researchers could use to provide cures for human diseases. 
>>Celera, whose corporate motto was ''Speed matters. Discovery can't 
>>wait,'' planned to patent several hundred genes and license them to 
>>commercial outfits for a fee, while publishing the nonpatented 
>>sequences on the company's Web site.
>>As Celera issued a series of ever-more-astonishing press releases 
>>reporting its having reached and passed a succession of important 
>>scientific milestones (one of which was sequencing the fruit fly 
>>genome in five months, whereas it had taken Sulston's group more 
>>than nine years to sequence C. elegans), Sulston saw his dream of 
>>an open and unrestricted human genome turn into a nightmare of 
>>genomic privatization by a single-minded bio-capitalist.
>>To Sulston, the notion of ''patenting'' genes was morally 
>>offensive: the genome was the common heritage of humankind and not 
>>the preserve of any individual, group or corporation. Also, 
>>patenting genes made no conceptual sense, he thought; genetic 
>>sequences were not Venter's or anyone else's ''invention'' and 
>>should be no more patentable than a rainbow. And as a practical 
>>matter, tying up various bits of genetic information in endless 
>>patent disputes would retard the further progress of science and 
>>medicine. To Sulston and his colleagues in the publicly supported 
>>project, this was war.
>>In the end, a truce was declared under pressure from Congress, 
>>which allocated the project's funding, and President Clinton, who 
>>according to Sulston viewed the affray as a personal embarrassment 
>>and an obstacle to Al Gore's succeeding him as president. ''The 
>>White House wanted something nice to happen about the human 
>>genome,'' Sulston says, and what better spectacle than a 
>>simultaneous declaration in 2000 by the British and the Americans 
>>that a ''draft'' version of the genome had been completed? And so, 
>>Bill Clinton and Tony Blair proclaimed victory over the genome.
>>''The date of the announcement, 26 June, was picked because it was 
>>a day that happened to be free in both Bill Clinton's and Tony 
>>Blair's diaries,'' Sulston writes. ''Nobody was really ready to 
>>announce; but it became politically inescapable to do so. We just 
>>put together what we did have and wrapped it up in a nice way, and 
>>said it was done. . . . Yes, we were just a bunch of phonies!''
>>Indeed, this is a story in which nobody comes off looking good. 
>>Some of the world's top molecular biologists are shown plotting to 
>>deny Venter and Celera an early conquest of the genome. Sulston 
>>himself exhibits a meanspirited streak when he violates his own 
>>principle of free release of information by declining to give 
>>Venter some data he had requested. The Wellcome Trust, which 
>>financed the Sanger Center, of which Sulston was the director, 
>>''had not invested its money to see the benefits going to a United 
>>States entrepreneur,'' he says. So much for ''sharing.''
>>SULSTON chides Celera for issuing progress reports that he says in 
>>some cases wildly overstated the company's accomplishments. Celera 
>>used a ''shotgun'' approach to sequencing, a method that breaks up 
>>the genome into millions of pieces and then reads the molecular 
>>ordering of each piece individually. (Francis Collins, Watson's 
>>successor as director of the public project, was once quoted as 
>>saying that shotgun sequencing would produce ''the Cliffs Notes or 
>>the Mad magazine version'' of the genome.) Venter may have played 
>>down the problems of putting the pieces back together again, but 
>>the method had worked perfectly well with Haemophilus influenzae 
>>and the fruit fly.
>>And while Celera's press releases may have been skewed, Sulston's 
>>account of the patenting issue and the ethics of using gene 
>>sequences for private profit is equally lopsided. Genes are 
>>fragments of biological software and, like computer software, some 
>>genetic sequences are full of bugs. The primary point of patenting 
>>genes is to make it financially worthwhile for drug companies to 
>>spend the money and the years of research, development and clinical 
>>trials required to discover new drug molecules that will neutralize 
>>the effects of those faulty genes. ''If you have a disease, you'd 
>>better hope someone patents the gene for it,'' Venter has said.
>>Celera and Venter had their failings, but they were not the 
>>money-grubbing, bottom-dwelling slugs Sulston presents. They were 
>>the big bears in the forest that other genome scientists 
>>alternately tried to tiptoe around, keep up with and not lose face 
>>to. And against its own stated intentions, this book is a 
>>backhanded tribute to their influence.
>>Ed Regis is the author of five books about science. His new book, 
>>''The Info Mesa,'' will be published in May.
>>Published: 03 - 16 - 2003 , Late Edition - Final , Section 7 , 
>>Column 1 , Page 27
>>Copyright 2002 The New York Times Company | Privacy Information
>>April 20, 2003
>>'The Common Thread'
>>To the Editor:
>>I very much disagree with Ed Regis's comment, in his review of John 
>>Sulston and Georgina Ferry's book ''The Common Thread'' (March 16), 
>>that nobody in the story about the Human Genome Project comes off 
>>looking good. I believe the Human Genome Project, to which Sulston 
>>belonged, comes off looking very good indeed. Its scientists made 
>>their sequence data freely available in the public domain as soon 
>>as they obtained it. Regis quotes, apparently approvingly, the 
>>privately backed Craig Venter as saying, ''If you have a disease, 
>>you'd better hope someone patents the gene for it.'' On the 
>>contrary, if I had a genetic disease, I would hope that nobody 
>>could patent the gene, because I would want as many independent 
>>workers as possible working on a cure, which could then be 
>>patented. Regis is wrong when he says that Sulston's account of the 
>>patenting issue and ethics of using gene sequences for private 
>>profit is lopsided. The nucleotide sequence of a gene is there to 
>>be discovered, not invented. If the Human Genome Project had not 
>>pushed on when Venter claimed he could do the sequence, we would 
>>not have free and open data. In addition, the sequence would be a 
>>mess; it is clear that Venter's shotgun-sequencing approach was 
>>incapable of getting the complete human genome sequence.
>>Robert K. Herman
>>St. Paul
>Zeynep F. Altun M.D., Ph.D.
>Albert Einstein College of Medicine,
>Dept of Neuroscience and Psychiatry
>1410 Pelham Pkwy S., R#601
>Bronx, NY 10461
>phone: 718-430-2195
>zaltun at aecom.yu.edu


Zeynep F. Altun M.D., Ph.D.
Albert Einstein College of Medicine
Dept. of Neuroscience
1410 Pelham Pkwy South, R#601
Bronx, NY 10461-1101
718-430-8821 (fax)

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