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$99,000 to see your future?

by Rachel Lehmann-HauptMSN Money
April 9th, 2009

How much would you pay to know your past -- or your future? A number of new companies are asking people to pay anywhere from a few hundred dollars to $99,000 to create personal genetic blueprints.

In the past 10 years, advances in genetic science have begun to reveal secrets to our identity that we never before knew. Now, through a simple swab of the cheek or basic blood test, we can learn about thousands of years of our genetic history, the genes behind our physical traits and even our propensity for certain diseases.

But unlike some other scientific advances, many of these new technologies are headed straight for the consumer market, pitched by companies such as Knome, 23andMe, Family Tree DNA and deCode. The promise, proponents say, is that widespread genome mapping will result in better, more-personalized medical care.

Some tests let users learn about their ancestry through their mitochondrial DNA, prompting some surprising -- and often shocking -- discoveries that have changed their personal identities. (In the most well-known case, Henry Louis Gates Jr., a prominent Harvard professor of African-American studies, learned that his recent ancestry included far more West Europeans than the mostly African heritage of family lore.)

Companies such as 23andMe sell both ancestry information and a map of some common genome markers, including basic information about risk factors for heart disease, type 2 diabetes and other ailments.

But only a few companies now offer full genetic mapping of all 23 pairs of human chromosomes. Knome, a company founded in Cambridge, Mass., as an offshoot of Harvard's Personal Genome Project, is mapping complete genomes for $99,000, currently making the service within reach of only the superrich.

Knome won't disclose how many customers it has attracted since launching a year and a half ago, although it told Boston magazine it had landed 20 clients in its first year. Still, Knome's researchers predict that, as in the personal computing industry, the technology for genome mapping will become less expensive and eventually more widely available.

"Just to give you some context, the U.S. government finished sequencing the first genome in 2003, and it took 13 years and about $3 billion," says Jorge Conde, the 31-year-old CEO of Knome. "We're now at the point that we can do it for $99,000 in three months. Our goal is to eventually be able to offer this to a large segment of the population for around $1,000." (Just a year ago, Knome was asking $350,000 for its services.)

As the price comes down, this information could have an enormous impact on the future of medicine.

It is now estimated that 20,000 genes have been discovered in the human genetic code. Some genes are connected to physical traits such as blue eyes; others help determine personality traits -- whether you're

thrill-seeking or melancholic, for instance. Some genes, or collections of genes, can tell you whether you might develop breast cancer, heart disease or other conditions later in life.

Having the genes does not necessarily mean that you are going to get a particular disease. But knowing about your genes can help you change your environment to avoid getting a disease if you learn that you carry a gene that is associated with it.

"Your DNA is not your destiny," Conde says. "Most conditions are very complex and usually an interaction between genes and the environment."

Conde mentions a Knome customer who found out that he has a genetic marker for a rare eye disease that could lead to blindness. He had no reason to be screened for the disease, Conde says, because he was young and had no family history, but he is now having regular checkups and managing it.

"That's really the purpose of what we're trying to do," Conde says. "We're not diagnostic, but if there is information out there that's relevant to you and that helps you make better decisions, then I think that overall it's a positive thing."

James Sinclair, the CEO of a financial-software company in New York, recently spent $399 to get part of his genome mapped by 23andMe. He took a saliva test and received access to a secure, personalized Web page that offers information about his ancestry and his risk factors for certain diseases. Fortunately, he learned that he had no elevated risk for any disease, but the experience still opened his eyes.

"It was interesting to learn that I have a decreased risk (of) heart disease, but what really surprised me was seeing myself compared to the average," he says. "By the age of 45, I have a roughly 20% chance of developing heart disease or type 2 diabetes. That was a wake-up call to take care of my health and get some exercise."

Conde says that the real advantage of extensive genome mapping is in learning what makes you unique. "If you're looking at common markers, you're only looking at common conditions," he explains. "What really drives genetic risk isn't what's common to all of us, but what's individual and rare. . . . That information will eventually be the most informative."

Knome hopes more customers will sign up for its pricey, personalized service -- and with good reason. George Church, the head of the Personal Genome Project at Harvard, says that the actual cost of physically mapping a genome is currently only about $5,000.

"Knome is adding a considerable amount of value in the form of security, personalized interpretation, presentation and education," he says.

For that additional $94,000, customers receive an encrypted key in a sterling-silver case engraved with the Greek words for "know thyself." They can plug it into their computers and surf the information using a specialized computer interface called KnomeXplorer.

The company also sets up a full-day "genomics roundtable," during which the customer meets with a team of geneticists, biometricians and computer scientists for a basic lesson in genetic science, as well as an expert analysis of the client's genome. Knome also commits to follow-up conversations as more gene discoveries are made.

Until prices drop further, full genome mapping remains the purview of the ultrarich. Sinclair, the 23andMe customer, says that even $1,000 seems like a lot of money for this information. "For $1,000, I would probably go consult with a medical professional on how worthy the information is," he says.

That may, in fact, be the point. If this kind of testing becomes part of routine physicals, your doctor will be the one who keeps tabs on new gene discoveries and their relationship to your health.

And at that point, it may also be that your genetic information goes from luxury to necessity -- and that it will be covered by your health insurance. 

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