Posted by dj on July 7, 2000, at 21:48:57
In reply to Re: An eloquent M.D. writes about genetic(s) hype... » SLS, posted by SLS on July 7, 2000, at 8:26:21
>the project has not been completed, but has only just begun. I don't think the media has done a very good job describing this. So far, we have identified all the words, but we haven't discovered all of their definitions yet
>Scott,
Thanks for your thoughtful comments on that article. Lots of different angles to ponder as with all of these issues... I agree with the fact that the media has not done a very good job of covering the issues. The following article is an exception to that that raises some of the same concerns that Dr. Mate touched upon, though using different examples and context, and addresses some other concerns. It was published in the Globe and Mail's competior for the role of Canada's National Newspaper - The National Post and a related provincial newspaper: The Province.
Sante!
dj
June 27, 2000
The still unread book of life
There are many miles yet to go before scientists find the recipe for making a human being. Though the completed genome draft is indeed a milestone, there is much hype from various quarters
Margaret Munro
National PostGregor Mendel, a 19th-century monk, brilliantly inferred units of heredity -- or "genes" -- from his work in plant hybridization. One scientist says the gene concept is now so misleading it should be banned.
Stuart Davis,
The Province
Patricia Baird warns against inflated medical claims for genetics.
To listen to gene merchants tell it, we will soon have our chromosomes read as part of routine medical checkups.Our genetic foibles -- the mutations linked to dozens of disorders ranging from Alzheimer's to heart disease -- will be laid out for close inspection. And we will all be the better for it.
Craig Venter, who heads the leading U.S. genetics firm Celera, is so keen on the idea he talks of launching an Internet-based service to read millions of people's genes and then tailor drugs to their individual needs.
Francis Collins, head of the $5-billion international consortium that has just completed its draft of the human genome, also speaks of the benefits of routine gene checks. He says knowing our genetic weaknesses in advance should prompt us to cut out factors -- such as smoking and lousy diets -- that might trigger disease-causing genes. Either that, he says, or we will be able to take special drugs to stop the bad genes from kicking in.
Dream on, say the critics, who are more than a little wary of the hype surrounding the deciphering of the human genome.
It is a scientific milestone, they agree. But one that is so misconstrued there is a real danger billions of dollars are going to be misspent on needless genetic tests that exploit people's fears about having imperfect children and faulty genes.
"It is certainly not something that is going to change things in the next few years at all," says Patricia Baird, a medical geneticist and distinguished professor at the University of British Columbia. "It's just a stage along the way. A milestone in a long journey, and I'm afraid it may take us where we don't want to go."
She is so worried about the destination, she stood up at a recent meeting of the Genetics Society of America and listed a litany of concerns about the burgeoning genetics business. They range from fears of consumer exploitation by gene promoters to the need for university geneticists to declare their growing conflicts of interest.
The human genome is said to contain the recipe for life, the biochemical instructions that control everything from the colour of your eyes to production of the neurochemicals that make you think.
But scientists do not yet know how to interpret the genome, or its vast stretches of seemingly useless "junk" DNA. Nor are they sure how many genes there are in the genome. Estimates vary from 34,000 to 120,000. And they do not have a clue about what most of the human genes do, or what turns them on and off.
Bill Gelbart, a leading Harvard researcher, thinks the word "gene" is so misleading that he recently suggested it should be banned. It would be more accurate, he says, to speak of the compounds actually generated by different stretches or regions of DNA. This is because many "genes" produce different biochemical products depending on how they are tweaked by the various factors at work inside cells.
All of which makes the popular notion that genes cause disease more than a little simplistic. Or an "overly naive interpretation," as Baird puts it.
It is true that there are a handful of rare diseases, such as Huntington Disease, which are triggered by a single mutation on a known gene. People who inherit these disease-causing genes from their parents will eventually get the disease.
But most genetic factors involved in disease are much more subtle. More than a thousand different gene mutations have been linked with cystic fibrosis, Steve Jones, a British geneticist at University College in London, points out in a critique of the genome hype. And researchers, he notes, are years away from figuring out how to repair any of them.
He agrees completing the draft of the genome is a milestone. "An astonishing piece of research in micro-anatomy," he says. A breakthrough on a par with "Vesalius' dissection of the heart in 1543."
But do not hold your breath waiting for the medical revolution and payback promised by the genome "hyperbolists," says Jones. "Don't expect it for a while, not 400 years, maybe; but in my estimate nearer 40 than four."
He, like Baird, stresses that the big killers, such as cancer and heart disease, are triggered by a myriad of interacting factors including stress, pollution, diet, lifestyle and genes.
And there is plenty of evidence that the social and environmental components are more powerful -- and more treatable -- than the genetic factors, says Baird.
Genes no more cause heart disease, she says, than a high-stress job, a high-fat diet or a couch potato lifestyle, she says.
Baird chaired the Royal Commission on New Reproductive Technologies that assessed several emerging technologies, including genetics. In 1993, she and her fellow commissioners urged the federal health minister to introduce legislation to protect the public.
Baird is still waiting, saying the need is more urgent than ever given the way the biotech industry is gearing up to market and push its genetic wares.
The federal government and Allan Rock, the Health Minister, she says, have a responsibility to act to protect the well-being of the people of Canada.
"It would be the enlightened and principled and right thing to do," she says. "If we as a rich country don't start addressing this kind of thing it's simply going to be wide open internationally."
The threat, she says, is very real. And consumers are ripe for exploitation by the genetics industry that keeps growing, fuelled with big money and big expectations.
U.S. biotech companies raised US$8-billion a year through much of the 1990s and the investment is climbing. And enterprising companies like Celera, which has spent a fortune sequencing genes, are now looking for a return on their investments.
Biotech companies are expected to follow the promotional strategy that has worked so well for the pharmaceutical industry. It spends close to 24% of income on marketing, and has a sales force that visits doctors 30 million times a year to peddle its products, says Baird. The Internet is giving the companies an even broader reach, and Canadians are already availing themselves of the proliferating genetic tests that can be ordered over the Web.
As evidence of problems she points to the growing use of a $3,850 test to determine whether a woman has inherited genes linked to breast cancer.
Increasingly, she says, American doctors believe they should test all women, not just those with a family history of the disease.
Yet a negative test in no way guarantees a cancer-free life. Baird says fewer than 5% of all breast cancers are now thought to occur in women carrying the genes that can be picked up by the test.
She stresses that she is not against offering the test in families known to be at high risk of breast cancer. What concerns her is the commercial drive to use the test. "Inappropriate overuse is likely if low-risk women's anxiety is capitalized on by commercially oriented testing labs," says Baird, who wants the government to stipulate how and when such tests should be used and make sure they are accompanied by high-quality counselling and follow-up. MDS Laboratory Services started offering the $3,850 test in Canada in March, but there is no national consensus on who should have the test and who will pay for it. "It's a bit of a dog's breakfast," says Brian Harling, of MDS, referring to the way some provincial medical plans will pay for the test and others will not. He says he would welcome a standard Canadian approach.
Baird also worries about companies promoting genetic tests for human embryos.
In 1997, a Toronto fertility clinic, IVF Canada, started offering a service to screen human embryos for risk of 27 genetic diseases before they are implanted in mothers' wombs. In this $7,000 test, a sample is taken from a very early embryo that is probed to see whether it carries undesirable genes.
The test has been promoted as "the beginning of the end of genetic disease," says Baird. "Hyperbole," she says, that could lead to misuse. "Most people would like to have healthy children, and marketing of this technology could play into that goal in an exploitive and misleading way."
Academic geneticists are also increasingly entering into lucrative collaborations with big genetic companies or starting firms to promote their discoveries. "This means the opinions of academic researchers with investments in those firms, or with appointments on boards, or as consultants, can't necessarily be accepted as objective," says Baird, who wants scientists to be more up-front about their connections with industry.
"The blurring of academia with industry means a societal resource -- a body of independent scientists without commercial affiliation -- has been lost," she told the genetics meeting. "They may not provide objective input and opinion when society has to deal with choices posed by genetic technology."
Despite her long list of concerns, Baird says: "I'm not anti-genetic." Unravelling the genetic forces at work in disease will, she says, be very beneficial and, in some cases, lifesaving.
What she wants to see are safeguards to ensure that people are not misled and exploited and that genetics does not claim an inappropriately big slice of public research and health-care spending.
She also worries about framing, or defining ill health in way that pushes problems back on to the individual. "It allows awkward questions on social and health policies or inappropriate workplace organization to be avoided," says Baird, who points to studies showing that social and environmental factors, not genes, account for the recent and rapid changes in the incidence of breast cancer, heart disease and colon cancer.
"If ill health is defined as genetic, innate and simply unfolding, then social supports, good early nurturing, narrowing economic gaps and appropriate workplace organization are less likely to be underwritten by society," she says.
As for Craig Venter's musing that he will one day offer gene scans to the masses over the Internet, she doubts such a service will help "a bloody bit."
Only one-third of patients now follow their doctors' directions and at best 50% routinely take medications prescribed for their chronic medical problems. The idea that healthy people will take drugs for years on the basis of a genetic test and a future disease risk is likely to be low, she says. A persistent and irrational element in human nature appears to be stacked against such notions of mass genetic servicing.
poster:dj
thread:39430
URL: http://www.dr-bob.org/babble/20000630/msgs/39743.html