Whose DNA?


What happens when you can't get tested for a genetic disease because the company that makes the test doesn't have enough money to pay the company that owns the patent on the gene in question? Okay, this hasn't happened yet, but it's likely to become an issue soon.

"Fortunately, it doesn't appear that we're in a lot of danger," Stone said. "We've (been) doing this for a year and have not encountered a problem. But not encountering a problem in a year doesn't mean there will be no problems forever. Even a single problem that would require legal representation is just incredibly expensive for a completely non-moneymaking operation."

The ultimate answer, Stone believes, is to amend the Rare Diseases Act of 2002 to include patent freedom for nonprofit organizations that want to provide gene-testing services to patients with or at risk for rare diseases.

The law currently gives financial incentives to pharmaceutical companies to develop drugs for diseases that affect fewer than 200,000 people in the United States and would not otherwise make much revenue. But the law does not address genetic testing.

This is just another example of how unfit the system of patent and copyright is to new developments in science and technology.