An interesting article with an interesting spin.
It's about a project to put not only the read genome, but also the habits, health records and similar personal information on a site. The idea? The cost of keeping that information is way to high and it's much easier to put everything online. And good for the science.
The question is should we? Complete openness is equal to complete secrecy for me, because it more or less leads to the same things-some people will chose to not like you and some to like you. But when it's about genetics, it's much weirder. You put your entire physical information online, it's more than being naked, it's being totally exposed. We're are not our genes?Quite the contrary, we're all just genes. Our body keeps a record of everything that happened to us and to our ancestors. Even more, you not only put those genes, you put your habits online. All those things that make you YOU. Isn't this too much? It is for me.
Maybe I'm wrong, but I also think we should be more cautious when putting thing online especially when those things can do us harm. Entoussiasme is great, but if it can affect your whole life and that of your children, siblings and whatever, it's time to be rational.
What do you think? Are you for the complete openness or for the complete secrecy?
To give one more spin-I doubt anyone's genome is perfect and disease free. That's why if you consider this side of the issue, at the moment people understand we all have our flaws, it will be harder to use them against us. But it's a question of scale-it's either all of us, or none.
Taking a Peek at the Experts’ Genetic Secrets
BOSTON — Is Esther Dyson, the technology venture capitalist who is training to be an astronaut, genetically predisposed to a major heart attack?
Does Steven Pinker, the prominent psychologist and author, have a gene variant that raises his risk of Alzheimer’s, which his grandmother suffered from, to greater than 50 percent?
Did Misha Angrist, an assistant professor at Duke University, inherit a high risk of breast cancer, which he may have passed on to his young daughters?
On Monday, they may learn the answers to these and other questions — and, if all goes according to plan, so will everyone else who cares to visit a public Web site, www.personalgenomes.org. The three are among the first 10 volunteers in the Personal Genome Project, a study at Harvard University Medical School aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves.
The goal of the project, which hopes to expand to 100,000 participants, is to speed medical research by dispensing with the elaborate precautions traditionally taken to protect the privacy of human subjects. The more genetic information can be made open and publicly available, nearly everyone agrees, the faster research will progress.
In exchange for the decoding of their DNA, participants agree to make it available to all — along with photographs, their disease histories, allergies, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits.
Including phenotypes, which most other public genetic databases have avoided in deference to privacy concerns, should allow researchers to more easily discover how genes and traits are linked. Because the “PGP 10,” as they call themselves, agreed to forfeit their privacy, any researcher will have a chance to mine the data, rather than just a small group with clearance.
The project is as much a social experiment as a scientific one. “We don’t yet know the consequences of having one’s genome out in the open,” said George M. Church, a human geneticist at Harvard who is the project’s leader and one of its subjects. “But it’s worth exploring.”
A new federal law prohibits health insurers and employers from discriminating against individuals on the basis of their genetic profile. But any one of the PGP 10 could be denied life insurance, long-term care insurance or disability insurance, with no legal penalty. And no law can bar colleagues from raising an annoyed eyebrow at a PGP participant who, say, indulges in a brownie after disclosing on the Internet that she is genetically predisposed to diabetes.
Then there is the matter of potential recrimination — from siblings, parents and children who share half of the participants’ genes and did not necessarily agree to display them in public. Prospective participants are advised to consult with first-degree relatives, but except for identical twins, their consent is not required. Some volunteers are worried about their hurting their teenagers’ dating prospects.
Because of the known and unknown risks, Dr. Church required the first 10 participants to demonstrate the equivalent of a master’s degree in genetics. Most are either investors or executives in the biomedical industry, or else teach or write about it, so they may have a financial interest in encouraging people to part with their genetic privacy.
The project has drawn criticism from scientists and bioethicists who caution that even its highly educated volunteers cannot understand the practical and psychological risks of disclosing information long regarded as quintessentially private.
“I’m concerned that this could make it seem easy and cool to put your information out there when there is still a lot of stigma associated with certain genetic traits,” said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University. “There will be new uses of this data that people can’t anticipate — and they can’t do anything to get it back.”
For now, the PGP, which is privately funded, is sequencing only the fraction of participants’ genomes thought to have the most influence over disease, behavior and physical traits. But the question of how much value to place on genetic privacy has taken on more urgency as the technology for sequencing an entire human genome accelerated and the price has plummeted to as low as $5,000, so that it may soon be possible for everyone to possess their own genetic readout.
Sequencing a human genome — the six billion letters of genetic code containing the complete inventory of the traits we inherited from our parents — cost over $1 million just two years ago.The two scientists whose full genomes were sequenced in the name of research both made them public. But they differ on whether the practice should be widely recommended.
“I put mine out there, but I’m 80,” said James D. Watson, the chancellor emeritus of Cold Spring Harbor Laboratory and co-discoverer of the structure of DNA. “Randomly putting up young people’s genomes could cause individual harm, simply because there will be so many mistakes. We don’t know enough yet to interpret them.”
J. Craig Venter, a pioneer in human genome sequencing, said his nonprofit institute planned to sequence several dozen human genomes by the end of next year and to deposit the information in the public domain along with phenotype information in a model similar to that of the PGP. He said he had already heard from thousands of volunteers.
Besides, promises of privacy may be impossible to keep, given the extraordinary identifying properties of DNA. Over the last three years, more than a half-million people who participated in over 100 publicly financed genetic studies on traits like schizophrenia and drug addiction were promised that their anonymity would be protected. But last month, after a paper in a scientific journal described how an individual’s profile could be identified even when it was aggregated with hundreds of others, the National Institutes of Health abruptly restricted access to the data.
There are some signs that the reflex to protect genetic privacy may be shifting. On the Web site of 23 and Me, a company that markets a $400 minisnapshot of traits from risk of heart disease to ear wax type, some customers use pseudonyms to discuss their results, while others include links with their contact information.
And Sergey Brin, the co-founder of Google, recently revealed on his blog that he learned he has a considerably higher than average risk of developing Parkinson’s disease, which was diagnosed in his mother several years ago. (Mr. Brin is the husband of Anne Wojcicki, a co-founder of 23 and Me.)
“There are costs to keeping things secret,” Mr. Brin said in an interview. “There’s a much better chance that you will learn something useful if you are not trying to hide it.”
Still, it may depend on what “it” is.
Only about 1,300 of the 20,000 human genes have been so far linked to a particular trait, PGP researchers said.
Thus, even if Dr. Pinker chooses to remove from public view the chunk of DNA currently associated with Alzheimer’s risk, he is not necessarily protecting himself from future associations scientists may make about genetic data that may now seem innocuous enough to put on the Web.source