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Tuesday, September 16, 2008

When in Doubt, Spit It Out


Michael Nagle for The New York Times

A DATE WITH DNA K. C. Dustin and his wife, Debra Netschert, give saliva samples.

IT was a funny thing to be doing in a cocktail dress.


Michael Nagle for The New York Times

Rupert Murdoch, Barry Diller, Anne Wojcicki and Diane von Furstenberg at the DNA sample party last week.

Debra Netschert, a financial analyst, was sitting next to her husband, K. C. Dustin, an equities salesman, and spitting into a test tube at a party last week in Chelsea to promote a DNA testing company.

As a soundtrack that included “Whole Lotta Love” blasted, the couple were submitting samples for tests that could reveal disturbing news, like his propensity to develop throat cancer or the chances of her having pregnancy complications.

But Ms. Netschert adopted the party mood, focusing, at first, on the less consequential details about her heredity. “I want to figure out why I have freckles,” she said.

It was taking a few minutes to fill the tube with the required amount of saliva, so Ms. Netschert had a dry-mouthed moment to consider what the couple might do if her husband turned out to be carrying a gene that could doom his offspring.

“Then maybe we’ll adopt instead,” she said. “Really.”

Some people might fear a world where widespread DNA testing would remove the mysteries of their futures or even strip them of privacy. But the testing company 23andMe, which was the host of what it billed as a “spit party” in the middle of New York Fashion Week, filled with celebrities, wants people to think of their genomes as a basis for social networking. As in: You are invited to join the group Slow Caffeine Metabolizers.

Co-founded by Anne Wojcicki, the wife of a founder of Google, the company, which has token financial backing from Harvey Weinstein and Wendi Murdoch, hopes to make spitting into a test tube as stylish as ordering a ginger martini.

“It’s fun to learn about your own genome,” the 23andMe Web site says.

Typically, customers register and pay online — the price of a test was cut by nearly two-thirds to $399 last week — and are sent a testing kit. A customer spits into a tube, mails it in, and about a month later receives results via a Web account. The information on 89 genetic markers include details of customers’ ancestry as well as what current research suggests are proclivites to certain diseases and other genetic traits like one’s appetite for sugar and responsiveness to antidepressants.

Customers have been able to share their results with whomever they choose online, or keep the information private, since shortly after the company began offering the tests in November. A new feature allows customers to post DNA-related questions in a community forum.

A select group, which included family and friends of the owners, began using the forum in recent weeks, and some customers have begun networking with others who share their traits, such as lacking a sense of smell. Others are posting notices, seeking those who share a mutation in the gene called ACTN3, which is associated with muscle response, wondering if their fellows share a lack of musical talent.

“If you want to have a community around psoriasis,” Ms Wojcicki said, “we’d like to be able to allow you to form a psoriasis-specific community.”

Ms. Wojcicki’s own offline networking has built support for her company. She met Ivanka Trump in St. Barts, where Ms. Wojcicki and her husband, Sergey Brin, were spending the New Year holiday aboard a boat.

She had met Rupert and Wendi Murdoch, Mr. Weinstein and others at the Allen & Company annual conference in Sun Valley, Idaho, in 2004. This past July, she was back at the conference and told her friends about the idea for the spit party. They offered their support.

“I was sitting at a table at Allen & Company with Wendi Murdoch, Barry Diller, Diane von Furstenberg, Anderson Cooper and Sergey, and we were talking about tongue curling,” Ms. Wojcicki recalled. “Barry cannot roll his tongue, but Anderson Cooper can do a really complicated four-leaf clover.”

COMPREHENSIVE DNA tests may one day be a normal part of medical care, but right now 23andMe’s efforts to make genetic testing an impulse buy disturbs many researchers.

“People think if you have money to spend on this, why not buy a test instead of a model train for Christmas,” said Dr. Alan Guttmacher, acting director of the National Human Genome Research Institute of the National Institutes of Health. “It can be neat and fun, but it can also have deep psychological implications, both for how you view yourself and how others view you, depending on who else has access to the information.”

Ms. Wojcicki and Linda Avey, the company’s other founder, say their chief goal is to advance science by compiling a database of genetic information that medical researchers can tap (while protecting customers’ anonymity). Customers cannot opt out of having their information anonymously shared, but they can refuse to participate in surveys focusing on specific traits.

When customers see their results on the screen, they are instructed about which findings are based on widely accepted science and which are less certain because the research is considered preliminary.

Quintin Lai, a research analyst at the investment firm Robert W. Baird & Company, said 23andMe is following a different business model than its two chief rivals, DeCODEme and Navigenics. When Navigenics releases test results to customers, it assigns a “genetic counselor” who can explain what the results mean.

“If the gatekeeper is going to be a physician,” Mr. Lai said, “then the industry is going to go through the channels of educating physicians that this is a normal test, and physicians will begin recommending it to patients, and the industry’s growth will be much slower.”

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Michael Nagle for The New York Times

Dylan Lauren, Harvey Weinstein and Wendi Murdoch at the DNA sample party last week.

Michael Nagle for The New York Times

A photo of Wendi Murdoch loomed over the “spit party.”

As the party throbbed in the ground floor space of Barry Diller’s IAC Building on West 18th Street, Mr. Weinstein, the film producer, who has acquired the Halston clothing brand, joked that DNA testing was as buzzworthy as the fashion shows taking place all week. “Now that I’m in the fashion business,” he said, “I think genetics is a natural extension.”

Ms. Murdoch said she, her two children with Mr. Murdoch, her husband and his 99-year-old mother had all been tested.

“I think she’s the oldest one in the database,” Ms. Murdoch said. She added that she was pleased by results that showed Mr. Murdoch had inherited a gene from his mother associated with the heart, and that she is still hale. (His father died of a heart attack at 67.)

In a telephone interview before the party, Ms. Trump said she and five friends had been tested by 23andMe and used the company’s Web site to share results with one another. “I have a very low chance of becoming obese,” Ms. Trump said. “That makes me exceedingly happy.”

Not everyone is as genetically blessed as Ms. Trump. “There’s been a bit of heckling back and forth across my friend group,” said Ms. Trump, 26. “My oldest and best friend since childhood signed up at the same time as I did, so we have pointed out some of those things. I gave her a little ribbing that she better watch her caloric intake in the next 5 to 10 years.”

Jared Kushner, the owner of The New York Observer, who has dated Ms. Trump, said at the party that he had also been tested. But Ms. Trump said he had not shared his results with her. Asked if she would ditch a suitor if he had unfavorable genetics, she said: “That’s a tough question. I’m going to say no.” She paused. “It depends on what came up though.”

Navigenics and DeCODEme do not offer social networking capabilities. Kari Stefansson, the chief executive of DeCODEme, which is based in Iceland, said 23andMe is in the entertainment business, unlike his company, which has made many genome research discoveries.

“We are looking at DeCODEme as a serious product for analysis of medical issues,” he said.

His company stopped offering its tests for sale to New York State residents, as did Navigenics, after the State Department of Health sent letters informing the companies that it is illegal to offer medical tests in New York without proper licensing. Claudia Hutton, a spokeswoman for the Health Department, said that 23andMe also received such a letter, along with three dozen other DNA-testing companies.

A spokeswoman for 23andMe, Rachel Cohen, said the matter was being negotiated with the state. “We are still talking to them and hammering out the best method to do it to take into account their interest in regulating the industry,” Ms. Cohen said.

Ms. Hutton said that if 23andMe has continued offering tests since receiving their warning letter in December, the company could be fined $2,000 for each test done on a New York resident. There was no sign of a Department of Health inspector at the party.

But Roberto De Mitri, director of product management for a software company, was there. He stood at a computer playing with a 23andMe demonstration.

He said he and his fiancée had talked about how it was scary that someone might insist on seeing a potential mate’s DNA test before moving ahead in a relationship. But his curiosity had been piqued enough that he was spitting into a vial. After all, he said, the sharing of test results would not be that different than vetting a potential partner’s finances before forging ahead.

“You check that now,” he said, clicking on an icon. “Unless you fall completely in love.”

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