§ Mr. CohenTo ask the Secretary of State for Health if he will introduce legislation to protect anonymous genetic data obtained in confidence from being exploited by commercial companies without the consent of the patient; and if he will make a statement concerning the Source Informatics judgment. [119524]
§ Ms StuartGenetic data provided in confidence should not normally be disclosed to third parties without the consent of the individual to whom they relate. However, the Court of Appeal ruled in December 1999—the Source Informatics judgment—that once data have been effectively anonymised they are no longer confidential. Although we have no plans to introduce legislation in this area at the present time, the Department is considering whether patient interests and the broader public interest are adequately protected.
We remain concerned about the use of anonymised health data for commercial purposes that may not be in the public interest and have directed the Department to seek leave from the House of Lords to appeal against the Court of Appeal judgment.