empowered to sign up for a personal genome project if they wish, just as they should be empowered to forbid the use of any of their genetic data. “We don’t use sushi-grade data in the medical establishment. We use chum. It is deidentified and it is all ground up because we have to in order to come under the IRB requirements and in order to avoid a lot of the challenges of asking for permission. If we ask for permission, empower it, and make it easy, it will happen.”


Given the limited associations between genetic test results and most diseases, Shelton suggested that the business case for using health IT systems that incorporate genetic results rests on two motivations. The first is recruiting subjects for clinical trials. The second is the reduction of duplicate tests. In the future an advertising model may evolve as well, he added, as patients become willing to have their medical information used to make them aware of offers that are custom tailored to them.

More generally, he said, the most important piece of health care in the future will be data, which will make the IT department the profit center of health organizations. “The IT department in health care gets a very small fraction of what IT departments get in other industries,” he said. “The reason is because it is a cost center. It is not a profit center. Make it into a profit center, and budgets will go up.”

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