Capitol Ideas: Boastful Genome Science
Bethell, Tom
~AP ITO L I D EA~ by Tom Bethell Boastful Genome Science Journalists decline to play an adversary role. A t the time of the White House announcement about the human genome, we were reminded...
...If it's government funded-and more and more of science is-every claim is waved through the editorial checkpoints without scrutiny...
...The awesome possibility exists that gene therapy won't work with mutations that give rise to heritable diseases, and they won't work either with non-he> itable mutations, because they don't cause diseases...
...But now it seems there are far more proteins than there are genes...
...That has been the message...
...It's a good thing they do, too (not that they do it enough...
...TOM BETHELL is TAS's Washington corres#ondent...
...It's something like the Pravda of old, with stale propaganda in the headlines, and, sometimes, useful information popping up inside...
...One sad result of genetic testing is that "therapeutic" abortions will increasingly be advocated...
...They have not yet shown that these "somatic" mutations (as they are called) cause any disease at all...
...James M. Wilson, director of the institute for human gene therapy at the University of Pennsylvania and president of the American Society for Gene Therapy...
...And if Nobel Prize winners can do it, why not humble journalists...
...Let me tell you something," he said, very much on his high horse...
...Often, a new product may seem to work for a while, and then hopes will soar along with stock prices...
...As for journalists, they still can't bring themselves to cast doubt on boastful science...
...The whole concept of gene therapy for genetic diseases doesn't fit the business model," said Dr...
...No more genetic secrets, then, and a century will be needed to figure things out...
...Rick Weiss of the Washington Post said the problem is that "it can be difficult to tell where a gene begins and ends in the three billion letter sequence of human genetic code...
...Compare, again, the headlines and the buried story...
...That is still true today...
...A couple of days later the same Baltimore was quoted in the New York Times as saying: "Complexity is the word on everybody's lips these days when they s e e what the genome really looks like...
...our genes are a book open to all to read...
...When President Clinton, Francis S. Collins of the National Human Genome Research Institute, and J. Craig Venter of Celera Genomics orchestrated a burst of publicity for themselves in June, the media focused on political controversies rather than the science...
...Despite high hopes for a gene therapy that would repair the lung tissues of the 3o,ooo cystic fibrosis sufferers, none has emerged...
...Doctors sound silly saying "I don't know...
...The American Spectator - S e ~ t e ~r b e r ~ o o o 2. I...
...The publicity ensures that the flow of public funds continues...
...It is one of&e 25 divisions of the NIH...
...But few readers ever get to the fine print, and that is the way science reporting works...
...At the Cold Spring Harbor Laboratory, they were making bets on the final number of human genes...
...And they have been trying for years...
...Doesn't this show that, government hype notwithstanding, a real payoff is coming down the road...
...Why did the range increase even as more and more of the genome was "decoded...
...My belief is that none of these experiments will work out...
...The New York Times had this big front-page headline: "Genetic Code of Human Life Is Cracked by Scientists...
...Meanwhile, customers beware...
...He knew that wasn't true, of course...
...Code decoded...
...On page one we often saw something like this: "Understanding the human genome is expected to revolutionize the practice of medicine...
...They are state-approved, the bandwagon is rolling, and the reporters know they are not expected to raise doubts (just as they didn't question national securi~' claims before 1971 ). Network television exists sold...
...With the genome project, the New York Times, the Washington Post, and indeed Science magazine managed to present the scientific cIaims at two levels...
...If the scientists were impressed, that was good enough for the man-of-the-people...
...Martin's Press...
...At the moment, the genome discoveries will mainly generate diagnostic testswhich was what Collins and Venter seemed most eager to talk about on their talk-show tour...
...But Jack Germond waved a hand and said, in effect, "Aw, who understands this stuff...
...They can't get it to work even when money is no object...
...It well might--there was no immune system to attack the retrovirus that was used to introduce the repaired genes...
...That is the usual attitude...
...The result is that scientists are now to a large extent looking for disease-causing mutations that arise not in the germ line but in the course of ordinary cell division...
...But here they have a very different problem...
...So the whole notion of the gene is conceptually a mess right now, and it may be that the recent (post-DNA) understanding of it will have to be discarded...
...So biotechs will probably do a brisk business in diagnostic devices...
...And an arsenal of risky drugs will be prescribed, some of them no doubt best avoided (but most patients will be too intimidated to say no...
...Hey, it was science, so the media printed the press releases without a murmur...
...The "inside" accounts, plus a little checking I did on my own, make me wonder whether the genoine project amounts to much, so far...
...I don't have a license to practice medicine...
...The defective immune systems of three infants had been restored using corrected genes...
...His latest book is The Noblest Triumph (St...
...Fine print: "'We've had our gene since 1989,' says Dr...
...Here he was in the approved Bandwagon mode...
...Estimates ranged from 27,462 to 200,000...
...On the inside pages, however, you could find facts that undermined the headlines...
...Notice that journalists do reserve the right to question national security policy, the CIA, defense issues, tax cuts, and so on...
...French Team's Feat Would Be a First," reported the Washington Post...
...As for infusing the body with the essential protein that the defective gene cannot make, that can't be done either because the biochemistry of proteins is still not well enough understood...
...Code cracked...
...Mostly they sell goods to one another, or to the big drug companies...
...Already, some women are getting their breasts removed because they are said to harbor tumor-causing genes (although they are not present in the majority of breast cancers...
...A few illustrations: An oped in the Neve York Times by David Baltimore, the president of Caltech, was headlined "So,ooo Genes, and We I~mw Them NI (Almost).'A few days earlier, the July Scientific American appeared...
...The reason is that the mutation is in the germ line, which means that the defect appears in every cell in the body...
...Here's a misconception encouraged by eager-beaver scientists and their press agents...
...Congress is reassured that "the people" support this bold initiative...
...One story said: "Now that all the loo,ooo or so genes that make up the human genome have been deciphered...
...Again, you need to know how to locate the fine print, because when things don't pan out the related news item will be far less easy to find than the original headline...
...Here is a contrasting comment buried inside the New York Times two years ago: The focus ofgene therapy has shifted from inherited diseases toward more common ailments like cancer, AIDS and heart disease- all areas that could prove more profitable...
...at this level...
...Theirs was not to reason why...
...But they cannot now be cured by gene therapy...
...Yet Baltimore had begun his article: "Humans have no more genetic secrets...
...What about the z,500odd biotech companies around the U.S., perhaps 80 percent of them hoping to use genome data to cook up SOlnething they can sell...
...Now we learned that those hopes had been dashed...
...y ou may ask, what about the private sector...
...There was an interesting moment in April--a report from Paris of an actual gene therapy victory...
...The point that this cozy get-together was artfully contrived at a time when the project was still far from complete was tactfully ignored...
...They discussed "the race" between public and private sectors, genetic discrimination, privacy, and the patenting of genes...
...Wall Street ]oumal, June z6) The point mutations that cause muscular dystrophy, Huntington's chorea, Tay-Sachs disease, and sickle cell anemia have also been known, in some cases for decades...
...The permanent tendency of medical science is to pretend that we know more than we do...
...They are still in code...
...The gene today is thought of as a compromise between the classical "factor" of Mendelian genetics (a hypothetical construct, invisible yet controlling an outward trait of the organism) and the DNA molecule of Watson and Crick...
...Off the record, he was candid...
...We have a string ofnucleotides in sequence (As, C's, G's, and T's), but to a very large extent we don't know what these sequences are doing...
...All of them...
...Of the 420odd gene therapy experiments approved by the Recombinant DNA Advisory Committee at the NIH since 1989, about 22o have involved the hunt for cancer genes, while 30 have tested ever more complex theories about HIV...
...A t the time of the White House announcement about the human genome, we were reminded that when it comes to science, the press doesn't play "watchdog...
...He wasn't sure of the answer himselfl Which told me what I had suspected--that the genome people are much closer to the beginning of this project than they are to the end...
...We've got another century of work ahead of us, to figure out how all of these things relate to each other...
...Collins cautioning against that hubris...
...But if it doesn't work, you won't read about it on the front page...
...I phoned a scientist with two years experience at the genome institute headed by Francis Collins...
...Some biotechs produce drugs that usefully counteract the bad-effects of other drugs...
...Meanwhile, bear in mind that for the investment-hungry, sizzle-selling biotechs, a publicity bonanza is even more important than it is for the government...
...One had lost count of the heralded promises...
...Robert Beall, president of the Cystic Fibrosis Foundation...
...It isn't just that gene therapy for rare disorders doesn't pay...
...It is impossible to get the repaired gene into enough cells to make a difference...
...A few years ago I called a reporter in the Bay Area who was forever printing science press releases without taking thought and I asked him why he never questioned anything...
...At the front-page, propaganda level, the Heroic Deeds of Science were presented uncritically...
...It would be more true to say that the DNA has been put into code--encoded...
...But the "code" has, precisely, not been cracked...
...The New York Times noted that this "first success of gene therapy" had followed % decade of widely heralded promise followed by dashed hopes...
...Many genetic diseases, and there are thousands of them, affect anywhere from a handftll to a few thousand people worldwide, hardly a commercial prospect for phamraceutical companies...
...Scientists still sometimes call it "junk," but I was glad to see Dr...
...Genes are said to be specific segments of the 3.15 billionunit chain of DNA, and each gene is said 20 September ~ooo _9 The American Spectator to "code for" one protein...
...Baltimore may well be right when he says that it may take another loo years...
...With their vaunted diagnostics, doctors will be telling more and more patients they are "at risk" for this and that...
...Mostly, they are looking for cancer-causing genes (see July/August TAS...
...Maybe this one really will work out...
...This is where it gets interesting, and where the fine print becomes crucial...
...One who did raise a question, in a weekend talk show, was the columnist Charles Krauthammer...
...But when it comes to science, the adversary press is a no-show...
...I won't even get into the 97 percent of the genome whose function is not known...
...Why was everyone so hazy about the number of genes, I asked...
Vol. 33 • September 2000 • No. 7
