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[ SCIENCE ]Genetic blueprint or Bentley?

A detailed map of the genome is the newest luxury item, but some scientists worry about 'genomic elitism' and unbalanced access to knowledge that could help provide better healthcare for all

By Nicholas Bakalar  /  NY TIMES NEWS SERVICE , NEW YORK

Dan Stoicescu in Dully, Switzerland, has purchased a map of his own genome.


On a cold day in January, Dan Stoicescu, a millionaire living in Switzerland, became the second person in the world to buy the full sequence of his own genetic code.

He is also among a relatively small group of individuals who could afford the US$350,000 price tag.

Stoicescu is the first customer of Knome, a company based in Cambridge, Massachusetts, that has promised to parse his genetic blueprint by spring. A Chinese executive has signed on for the same service with Knome's partner, the Beijing Genomics Institute, the company said.

Scientists have so far unraveled only a handful of complete human genomes, all financed by governments, foundations and corporations in the name of medical research. But as the cost of genome sequencing goes from stratospheric to merely very expensive, it is piquing the interest of a new clientele.

"I'd rather spend my money on my genome than a Bentley or an airplane," said Stoicescu, 56, a biotechnology entrepreneur who retired two years ago after selling his company. He says he will check discoveries about genetic disease risk against his genome sequence daily, "like a stock portfolio."

But while money may buy a full readout of the 6 billion chemical units in an individual's genome, biologists say the super-rich will have to wait like everyone else to learn how the small variations in their sequence influence appearance, behavior, abilities, disease susceptibility and other traits.

"I was in someone's Bentley once - nice car," said James Watson, the co-discoverer of the structure of DNA, whose genome was sequenced last year by a company that donated the US$1.5 million in costs to demonstrate its technology. "Would I rather have my genome sequenced or have a Bentley? Uh, toss up."

He would probably pick the genome, Watson said, because it could reveal a disease-risk gene that one had passed on to one's children, though in his case, it did not. What is needed, he said, is a "Chevrolet genome" that is affordable for everyone.

Biologists have mixed feelings about the emergence of the genome as a luxury item. Some worry that what they have dubbed "genomic elitism" could sour the public on genetic research that has long promised better, individualized health care for all. But others see the boutique genome as something like a US$20 million tourist voyage to space - a necessary rite of passage for technology that may soon be within the grasp of the rest of us.

"We certainly don't want a world where there's a great imbalance of access to comprehensive genetic tests," said Richard Gibbs, director of the human genome sequencing center at Baylor College of Medicine. "But to the extent that this can be seen as an idiosyncratic exercise of curious individuals who can afford it, it could be quite a positive phenomenon."

It was the stream of offers from wealthy individuals to pay the Harvard laboratory of George Church for their personal genome sequences that led Church to co-found Knome last year (most people pronounce it "nome," though he prefers "know-me").

"It was distracting for an academic lab," Church said. "But it made me think it could be a business."

Scientists say they need tens of thousands of genome sequences to be made publicly available to begin to make sense of human variation.

Knome, however, expects many of its customers to insist on keeping their dearly bought genomes private, and provides a decentralized data storage system for that purpose.

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