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Entrepreneur Puts Himself Up for Study In Genetic 'Tell-All'
Dr. Venter Wants to Be First To Have His DNA Mapped; Risk of Blindness Revealed
By ANTONIO REGALADO, The Wall Street Journal
October 18, 2006; Page A1
J. Craig Venter, a biologist and brash entrepreneur, started a recent day with a bowl of oatmeal and skim milk. Since he is genetically predisposed to heart disease, he added "just a little" brown sugar. By the end of the day, Dr. Venter was informed he's got a gene that quadruples his risk of going blind.
Life can be that way when you study your own DNA.
Dr. Venter, 60 years old, is best known for his role in the scientific fight to be the first to decipher the full sequence of the human genome, the billions of DNA letters, or chemical building blocks, that make up the average human's genetic code. In the late 1990s, he headed a private company, Celera Genomics, which tried to finish the task before the Human Genome Project, a public-sector effort paid for by the U.S. government and others. Both sides reached a negotiated "tie" announced by the White House in 2000.
After Dr. Venter was ousted by Celera, in a dispute over business strategy, he revealed a big secret. More than half the DNA decoded by Celera was his own. Now he heads up his own scientific center, the nonprofit J. Craig Venter Institute in Rockville, Md. One major activity over recent months: completing the decoding of Dr. Venter's genome.
As in all humans, Dr. Venter's six billion DNA letters make up thousands of genes that are strung along his 46 chromosomes. The genes act as the body's instruction manual, producing proteins that are the building blocks of life and helping determine things like height.
Institute staffers are close to finishing an almost complete readout of Dr. Venter's DNA. The biologist plans to release his genetic code to the world through a computer database, and last week finished a 469-page draft of an autobiography discussing his days as a medic in Vietnam, his two divorces, and what he's found in his DNA. He's chosen the title, "A Life Decoded."
There's OCA2, a gene on chromosome 15 that probably accounts for his blue eyes. His version of another gene has been tied to longevity, while another is linked to clogged arteries -- a trait he may have inherited from his father, who died at age 59 from a heart attack. And despite his entrepreneurial bent, his dopamine D4 receptor doesn't come in a version linked to risk-taking behavior.
Dr. Venter says his project will yield the first complete map of an individual human. Both Celera's map and the one created by the public consortium, by contrast, were mosaics of several individuals -- creating a "generic" road map of human DNA. But while humans share more than 99% of the same DNA, it's the tiny quirks that make individuals unique.
Some of Dr. Venter's former rivals think the project is as much about ego as science. "As a general rule in science, you aren't supposed to do experiments on yourself," says Philip Green, an expert in genomes at the University of Washington, in Seattle. "There is an issue of maintaining objectivity."
Critics also say Dr. Venter's DNA map won't be of much scientific value because it is only one genome. Geneticists need data from many people to draw useful conclusions linking genes to disease. Dr. Venter dismisses such criticism, saying his map is just the first of many.
Indeed, Dr. Venter's ideas are starting to catch on. Last month, Harvard University called for seven volunteers to agree to be decoded in a "Personal Genome Project." This month, a California foundation offered a $10 million prize to anyone who figures out a super-fast way to map out an individual's DNA. As part of the competition, TV host Larry King and financier Michael Milken agreed up to be decoded. So did wheelchair-bound physicist Stephen Hawking.
Driving the race for individual DNA readings is the plummeting cost, which is dropping by half every two years. Although the price tag for decoding a person's entire genome is still around $20 million, within a decade it may become cheap enough for ordinary folks to know their genes.
Dr. Venter says leading researchers have a social role to play by making their genomes public. Releasing an individual's genome could put that person in danger of discrimination or could disclose damaging health facts. Some employers, for instance, might not want to hire someone whose genes make it likely they will get costly diseases. "I'm hoping to show that the pioneers don't think it's a major risk," says Dr. Venter.
Interpreting genes is still far from simple. Minute variations in the spelling of a person's DNA may account for much about their intelligence, how they look, and what diseases they might get. But in only limited cases have those influences been teased out. Particularly for healthy people, that means genes don't provide black-or-white answers.
"It's not a 'so what,' but it's certainly not 'Aha!' either," says Dr. Venter of his experience thus far.
At the request of The Wall Street Journal, Dr. Venter's associates checked his versions of specific genes that have been linked to health risks. During a conference call to discuss the results, Dr. Venter learned his genes place him in greater danger of going blind.
Jiaqi Huang, a biologist who works for him, told Dr. Venter one of his genes, known as CFH, had a variation in the spelling of the DNA -- known as a mutation -- recently linked by Yale University scientists to a "very high" risk for macular degeneration, a common eye disease that causes blindness. "What does very high mean?" Dr. Venter asked, sounding concerned.
People have two copies of most genes, one inherited from each parent. In the case of Dr. Venter's CFH genes, only one copy is mutated -- raising his risk of the disease by about three to four times. If both had mutated, that risk would jump to more than 10 times. There's not yet any way to prevent the illness. "You'll have to interview me in 20 years and ask if I can still see," he says.
Institute biologist Samuel Levy has looked at Dr. Venter's genes and given him ideas for his book. Studying his bosses' DNA has lead to some awkward moments. Dr. Levy remembers being nervous about telling Dr. Venter that his version of the ApoE gene puts him at an elevated risk for early Alzheimer's disease. "OK, thanks," Dr. Venter replied.
Dr. Venter is hoping the genetic code may help him stay healthy. After learning that he has a genetic risk for heart disease, also due to his ApoE gene, Dr. Venter got a prescription for the cholesterol-lowering pill Lipitor. It turns out the pill might ward off Alzheimer's in people with his genes, according to preliminary studies. "I can try to change my genetic destiny, play the probabilities," says Dr. Venter.
But, as Dr. Venter knows, genes don't tell all. Dr. Venter was recently diagnosed with melanoma and successfully treated with surgery. But his p16 gene, which creates a risk for skin cancer when mutated, is normal. Dr. Venter's explanation: He likely got cancer because he spent too much time in the sun, including on his luxury sailboat, the Sorcerer II.
Write to Antonio Regalado at antonio.regalado@wsj.com
Dr. Venter Wants to Be First To Have His DNA Mapped; Risk of Blindness Revealed
By ANTONIO REGALADO, The Wall Street Journal
October 18, 2006; Page A1
J. Craig Venter, a biologist and brash entrepreneur, started a recent day with a bowl of oatmeal and skim milk. Since he is genetically predisposed to heart disease, he added "just a little" brown sugar. By the end of the day, Dr. Venter was informed he's got a gene that quadruples his risk of going blind.
Life can be that way when you study your own DNA.
Dr. Venter, 60 years old, is best known for his role in the scientific fight to be the first to decipher the full sequence of the human genome, the billions of DNA letters, or chemical building blocks, that make up the average human's genetic code. In the late 1990s, he headed a private company, Celera Genomics, which tried to finish the task before the Human Genome Project, a public-sector effort paid for by the U.S. government and others. Both sides reached a negotiated "tie" announced by the White House in 2000.
After Dr. Venter was ousted by Celera, in a dispute over business strategy, he revealed a big secret. More than half the DNA decoded by Celera was his own. Now he heads up his own scientific center, the nonprofit J. Craig Venter Institute in Rockville, Md. One major activity over recent months: completing the decoding of Dr. Venter's genome.
As in all humans, Dr. Venter's six billion DNA letters make up thousands of genes that are strung along his 46 chromosomes. The genes act as the body's instruction manual, producing proteins that are the building blocks of life and helping determine things like height.
Institute staffers are close to finishing an almost complete readout of Dr. Venter's DNA. The biologist plans to release his genetic code to the world through a computer database, and last week finished a 469-page draft of an autobiography discussing his days as a medic in Vietnam, his two divorces, and what he's found in his DNA. He's chosen the title, "A Life Decoded."
There's OCA2, a gene on chromosome 15 that probably accounts for his blue eyes. His version of another gene has been tied to longevity, while another is linked to clogged arteries -- a trait he may have inherited from his father, who died at age 59 from a heart attack. And despite his entrepreneurial bent, his dopamine D4 receptor doesn't come in a version linked to risk-taking behavior.
Dr. Venter says his project will yield the first complete map of an individual human. Both Celera's map and the one created by the public consortium, by contrast, were mosaics of several individuals -- creating a "generic" road map of human DNA. But while humans share more than 99% of the same DNA, it's the tiny quirks that make individuals unique.
Some of Dr. Venter's former rivals think the project is as much about ego as science. "As a general rule in science, you aren't supposed to do experiments on yourself," says Philip Green, an expert in genomes at the University of Washington, in Seattle. "There is an issue of maintaining objectivity."
Critics also say Dr. Venter's DNA map won't be of much scientific value because it is only one genome. Geneticists need data from many people to draw useful conclusions linking genes to disease. Dr. Venter dismisses such criticism, saying his map is just the first of many.
Indeed, Dr. Venter's ideas are starting to catch on. Last month, Harvard University called for seven volunteers to agree to be decoded in a "Personal Genome Project." This month, a California foundation offered a $10 million prize to anyone who figures out a super-fast way to map out an individual's DNA. As part of the competition, TV host Larry King and financier Michael Milken agreed up to be decoded. So did wheelchair-bound physicist Stephen Hawking.
Driving the race for individual DNA readings is the plummeting cost, which is dropping by half every two years. Although the price tag for decoding a person's entire genome is still around $20 million, within a decade it may become cheap enough for ordinary folks to know their genes.
Dr. Venter says leading researchers have a social role to play by making their genomes public. Releasing an individual's genome could put that person in danger of discrimination or could disclose damaging health facts. Some employers, for instance, might not want to hire someone whose genes make it likely they will get costly diseases. "I'm hoping to show that the pioneers don't think it's a major risk," says Dr. Venter.
Interpreting genes is still far from simple. Minute variations in the spelling of a person's DNA may account for much about their intelligence, how they look, and what diseases they might get. But in only limited cases have those influences been teased out. Particularly for healthy people, that means genes don't provide black-or-white answers.
"It's not a 'so what,' but it's certainly not 'Aha!' either," says Dr. Venter of his experience thus far.
At the request of The Wall Street Journal, Dr. Venter's associates checked his versions of specific genes that have been linked to health risks. During a conference call to discuss the results, Dr. Venter learned his genes place him in greater danger of going blind.
Jiaqi Huang, a biologist who works for him, told Dr. Venter one of his genes, known as CFH, had a variation in the spelling of the DNA -- known as a mutation -- recently linked by Yale University scientists to a "very high" risk for macular degeneration, a common eye disease that causes blindness. "What does very high mean?" Dr. Venter asked, sounding concerned.
People have two copies of most genes, one inherited from each parent. In the case of Dr. Venter's CFH genes, only one copy is mutated -- raising his risk of the disease by about three to four times. If both had mutated, that risk would jump to more than 10 times. There's not yet any way to prevent the illness. "You'll have to interview me in 20 years and ask if I can still see," he says.
Institute biologist Samuel Levy has looked at Dr. Venter's genes and given him ideas for his book. Studying his bosses' DNA has lead to some awkward moments. Dr. Levy remembers being nervous about telling Dr. Venter that his version of the ApoE gene puts him at an elevated risk for early Alzheimer's disease. "OK, thanks," Dr. Venter replied.
Dr. Venter is hoping the genetic code may help him stay healthy. After learning that he has a genetic risk for heart disease, also due to his ApoE gene, Dr. Venter got a prescription for the cholesterol-lowering pill Lipitor. It turns out the pill might ward off Alzheimer's in people with his genes, according to preliminary studies. "I can try to change my genetic destiny, play the probabilities," says Dr. Venter.
But, as Dr. Venter knows, genes don't tell all. Dr. Venter was recently diagnosed with melanoma and successfully treated with surgery. But his p16 gene, which creates a risk for skin cancer when mutated, is normal. Dr. Venter's explanation: He likely got cancer because he spent too much time in the sun, including on his luxury sailboat, the Sorcerer II.
Write to Antonio Regalado at antonio.regalado@wsj.com
Yeah mapping the genome is a neat thing, but because of the all-mighty dollar I can see it turning into a "designer baby" or being denied insurance because of genetic health risks. But they need a sample from somewhere. I'd let them use mine.
$399 for personal mapping. incomplete but it is a start ;)
https://www.23andme.com/
hess>>denied insurance because of genetic health risks...
yes this may be a risk. but widespread (and confidential) testing for genetic predispositions provides incentive for innovators to research gene treatments that may correct for genetic defects before they emerge or therapies that train individuals in how to change their life styles in order to minimize the risk of a genetic predispositions turning into permanent conditions.
yeah there is the risk of abuse. but the potential for innovation to improve the condition of life seems so much greater.
https://www.23andme.com/
hess>>denied insurance because of genetic health risks...
yes this may be a risk. but widespread (and confidential) testing for genetic predispositions provides incentive for innovators to research gene treatments that may correct for genetic defects before they emerge or therapies that train individuals in how to change their life styles in order to minimize the risk of a genetic predispositions turning into permanent conditions.
yeah there is the risk of abuse. but the potential for innovation to improve the condition of life seems so much greater.