Genetic testing companies can create private databases to help them interpret the clinical significance of genetic variants, and Duke University's Robert Cook-Deegan and his colleagues argue in the European Journal of Human Genetics that such proprietary collections of data could lead to more expensive tests with less accurate results. "Current practices of proprietary databases may hinder interpretation of genomic data and impede the advance of personalized medicine," Cook-Deegan and his colleagues write. "Policies to reward or require data-sharing can prevent some foreseeable problems caused by limited access to proprietary data about the clinical significance of genetic variations."

In particular, Cook-Deegan and his colleagues focus on Myriad Genetics. They write that Myriad "has leveraged its BRCA patents to become the dominant BRCA testing service and, in turn, to create a valuable database. Myriad clearly sees its proprietary database as a source of competitive advantage." The authors note that Myriad has access to public databases, but others do not have access to Myriad's databases.

“They haven’t done anything illegal, they found a hole that no one else thought of and built a business model around it,” Cook-Deegan tells the Nature News Blog. He adds that the drawback for patients is that if they do not use Myriad's test, they are more likely to be told that their results cannot be interpreted. Additionally, the Nature News Blog notes that Myriad's "analysis that has not been vetted by the greater scientific community."

Cook-Deegan and his co-authors write that, as Myriad enters the European market, policymakers there "can ensure that the data necessary to interpret the clinical significance of genetic variations are made public, where they can be subjected to scientific scrutiny and be available to benefit patients and health professionals around the world."

Daily Scan's sister publication GenomeWeb Daily News has more on this report here.