Sun, Mar 09, 2008 - Page 19 News List

[ 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

Stoicescu said he worried about being seen as self-indulgent (though he donates much more each year to philanthropic causes), egotistical (for obvious reasons) or stupid (the cost of the technology, he knows, is dropping so fast that he would have certainly paid much less by waiting a few months).

But he agreed to be identified to help persuade others to participate. With only four complete human genome sequences announced by scientists around the world - along with the Human Genome Project, which finished assembling a genome drawn from several individuals at a cost of about US$300 million in 2003 - each new one stands to add considerably to the collective knowledge.

"I view it as a kind of sponsorship," he said. "In a way you can also be part of this adventure, which I believe is going to change a lot of things."

Stoicescu, who has a PhD in medicinal chemistry, was born in Romania and lived in the US in the early 1990s before founding Sindan, an oncology products company that he ran for 15 years. Now living with his wife and 12-year-old son in a village outside Geneva, he describes himself as a "transhumanist" who believes that life can be extended through nanotechnology and artificial intelligence, as well as diet and lifestyle adaptations. His genome sequence, he reasons, might give him a better indication of just what those should be. Last fall, Stoicescu paid US$1,000 to get a glimpse of his genetic code from deCODE Genetics. That service, and a similar one offered by 23andMe, looks at close to a million nucleotides on the human genome where DNA is known to differ among people.

But Stoicescu was intrigued by the idea of a more complete picture. "It is only a part of the truth," he said. "Having the full sequence decoded you can be closer to reality."

How close is a matter of much debate. Knome is using a technology that reads the genome in short fragments that can be tricky to assemble. All of the existing sequencing methods have a margin of error, and the fledgling industry has no agreed-on quality standards.

Knome is not the only firm in the private genome business. Illumina, a sequencing firm in San Diego, plans to sell whole genome sequencing to the "rich and famous market" this year, said its chief executive, Jay Flatley. If competition drives prices down, the personal genome may quickly lose its exclusivity. The nonprofit X Prize Foundation is offering US$10 million to the first group to sequence 100 human genomes in 10 days, for US$10,000 or less per genome. The federal government is supporting technology development with an eye to a US$1,000 genome in the next decade.

But for now, Knome's prospective customers are decidedly high-end. The company has been approached by hedge fund managers, Hollywood executives and an individual from the Middle East who could be contacted only through a third party, said Jorge Conde, Knome's chief executive.

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