Survey on patient involvement in design of data control mechanisms

A series of freeform and structured interviews with relevant patients, patient relatives and patient representatives, the results of which will inform a survey (to gather further input, and seek views on proposed solutions) targeting the same classes of stakeholders plus consortia and networks of clinical diagnosticians, ethicists, and policymakers. This survey will be the basis for genuine patient involvement in developing control mechanisms over personal genome data. The survey will result in a set of recommendations to be implemented by the various patient organisations and hospitals.