Who Owns the Data?

Susan M. Love | Huffington Post | November 8, 2011

Everyday, thousands of altruistic men and women participate in clinical research projects. They carefully fill out questionnaires, give samples of tissue or body fluids, and take drugs or placebos, all in an effort to improve our understanding and/or our treatment of diseases.

Terrific advances have resulted from these efforts, such as the use of Herceptin to treat breast cancer or the identification of HPV as the cause of cervical cancer. But there are also many potential advances that have not been made precisely because, unlike preschoolers, many clinical researchers have not learned how to share!

Information and tissue samples are taken from patients with all sorts of diseases, from Alzheimer's and depression to cancer and heart disease. New technologies have made it possible for scientists to combine the molecular data collected from these patients' samples with data from clinical trials, and, almost like a massive jigsaw puzzle, piece together new therapies and figure out who should get which drugs-which is wonderful...