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Leading Researchers Team Up to Form Genetic Bank

NEW YORK, Oct 9 – A team of leading researchers from the SNP Consortium, Motorola, and IBM announced Monday the formation of a new company that will serve as a genetic bank, holding accounts that will contain individual genetic profiles and act as an intermediary between patients, researchers, and healthcare providers.

" We will effectively provide a high security online network for individual genetic banking," Arthur Holden, chairman and CEO of the new venture, First Genetic Trust, told GenomeWeb.

Based in Chicago, First Genetic Trust will not itself generate the genetic information. Instead, the company will function as a guarded repository for the data.

Holden said researchers, pharmaceutical companies, and healthcare providers need access to individual genetic information to make personalized medicine a reality. But he believes that people, wary of releasing their personal profiles, would do so only to an independent third party that they could hold responsible for the security of the information.

" The concerns that you have whenever you do this kind of research is who’s going to have access to these data," said Holden, who will retain his postion as chairman and CEO of the SNP Consortium. " The fundamental issue is the individual’s right to control that information."

David Wang, formerly head of genomics and bioinformatics at Motorola, and Andrea Califano, formerly director of IBM’s Computational Biology Center, are co-founders of the new company. IBM will develop and deploy the information technology infrastructure for the data security and privacy protection required in managing and storing genetic information.

The incentive for patients to open a genetic bank account is not simply a free toaster. As personalized medicine moves from theory to the doctor’s office, First Genetic Trust will " take your information and the information from [a drug response] profile, BLAST the two together and informatically provide that diagnostic back to the provider," said Holden. He noted that initially the data gathered would be used for research purposes only.

The bank account model is an alternative to what Holden called " the ludicrous concept of having this information on a credit card, which they can lose or it can become encrypted."

First Genetic Trust has so far raised $13 million from Venrock Associates and ARCH Venture Partners, said Holden. The business model counts on revenue from pharmaceutical companies, healthcare providers, and, yes—insurance companies.

Involving the insurer is a necessity as " we can be begin to tailor how an individual interacts with the healthcare system based on their specific risk profile," said Holden, a former insurance executive.

But genetic accounts will only be released with the patient’s informed consent, said Holden. And to address concerns that insurance companies will deny coverage to patients with risky genetic profiles, " you do that by laws," he said.

Besides, said Holden, the concern is unfounded. " Having been the assistant to the head of Blue Cross Blue Shield and having been involved with the team that developed the first managed care plan, there is no way any quality insurance company will be using this information for adverse selection," he said. " That would be silly."

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