Open data for common genomics research activities

Together with other funders, the Ewing Marion Kauffman Foundation, based in Kansas City, Missouri, is now launching a product that aims to “create the world’s largest pool of openly available, user-contributed data about health and genomics” in hopes of easing challenges with informed consent and data ownership that some biomedical researchers say are holding science back in the era of ‘big data’.

The Portable Legal Consent for Common Genomics Research, developed by the Consent to Research project, is a system through which users can donate their data to databases that remove identifying details, such as name and e-mail address. The databases then assign an identification number to all of the data from each user and deliver the de-identified data to researchers, who must agree to broad conditions designed to prevent harm to the data contributors. Data donors must also undergo a detailed informed consent process, including, for instance, watching a six-and-a-half minute video that cannot be fast-forwarded.

The project received approval from ethics reviewers on 23 April; as soon as May, anyone will be able to sign the consent and begin contributing their own data to the database. [See http://weconsent.us]