Interesting article about how laypersons are taking scientific data about themselves into their own hands. From the Wall Street Journal:
More than a decade ago, in hopes of advancing research on the rare genetic disease that afflicts her children, Sharon Terry let two different researchers draw their blood for study. But when she asked for the results of the investigations, the scientists gave her a startling response. Information generated from her own children’s DNA, they said, didn’t belong to her.
“It’s my data,” says Ms. Terry, who is now president and chief executive of Genetic Alliance, a network of organizations that do research, advocacy and education around genetics, in Washington, D.C. “But it gets locked away in some database that I can’t get to.”
Today, Ms. Terry is part of a growing movement to unlock medical secrets by empowering patients to gather, control and even analyze their own health data. For some people, that means posting detailed personal information, family histories and genetic test results online for all to see. Others may decide to make public only limited information or to grant access exclusively to researchers who agree to share the results of their studies.