§ Dr. GibsonTo ask the Secretary of State for Health what assessment he has made of the ownership of patent rights following the identification of individual gene sequences from blood samples donated to the project Biobank UK. [62276]
§ Ms BlearsThe UK Biobank represents a database that can be used to investigate the combined effects of genotype, lifestyle and environmental exposures on the risk of developing the common multi-factorial diseases of later life. Policies on the ownership of intellectual property arising from research using the data contained within the UK Biobank have yet to be finalised, and are the subject of on-going consultation. Current thinking is that ownership of such intellectual property will reside with the organisation that hosts the workers undertaking the research. A key issue to be resolved is whether either the funding bodies or the hub should seek to retain any control over the intellectual property and whether this would be acceptable to the organisations hosting such research. A condition of using the UK Biobank is that, after a short period of time to allow for the preparation of publications or filing of patent applications, all results generated from analysis of the samples or data held must be added to the central databases and hence be made available to other researchers.
§ Dr. GibsonTo ask the Secretary of State for Health what plans he has to allow the disclosure of personal genetic information from Biobank UK and NHS sources to third parties. [62274]
§ Ms BlearsOnly anonymised genetic information and linked clinical data from the UK Biobank will be released to third parties. An independent monitoring body, separate from the UK Biobank funders, will be established to develop the detailed policies regarding access to anonymised samples and data. These proposals are in accord with the recommendations made by the Human Genetics Commission in their report on the use of personal genetic data. All proposals to use the information contained within the UK Biobank will also have ethics committee approval and will be reviewed by the scientific management committee. Arrangements for any commercial use of the samples or data will be explained to participants when their consent is sought.
§ Dr. GibsonTo ask the Secretary of State for Health what plans he has to commission an independent review of value-for-money of the genetic record project Biobank UK. [62275]
852W
§ Ms BlearsInternational scientific peer review of the protocol for the UK Biobank project was used to inform the recent funding decisions of the Medical Research Council, Wellcome Trust and the Department. It is anticipated that recruitment to the UK Biobank will not begin until at least the middle of 2003 and it will then be several years before the first outputs are obtained. The work of the UK Biobank will be subject to at least annual review by the funding partners. It is too early to consider commissioning an independent value-for-money review of this initiative.