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House of Lords supports first UK genetic database

Annabel Ferriman, BMJ

Strong support for the Medical Research Council's proposal to establish a voluntary database containing the genetic details of 500000 individuals came this week from the House of Lords Select Committee on Science and Technology.

The committee also called for the setting up of an independent body, the Medical Data Panel, to safeguard the interests of individuals whose personal data are collected and held on genetic databases.

"The Data Protection Act 1998 offers significant protection to individuals over the use of their personal data. It is, however, the nature of research that there are always surprises around the corner," the report said.

It continued: "There may be future imperatives to use non-anonymised data in ways that could not be foreseen when samples are collected. It may often be impracticable . . . to consult individuals about this. Among our various recommendations, we propose a new independent body, the Medical Data Panel, to safeguard their interests."

Evidence for the report was collected by a subcommittee of the select committee, chaired by Lord Oxburgh, set up last July to investigate the present and future uses of human genetic databases. It took evidence from more than 55 medical institutions, drug companies, charities, and individuals.

The report expressed strong support for the initiative from the Medical Research Council, with the Wellcome Trust and the Department of Health, to establish a large national database to study the interactions of genetic and lifestyle factors in the occurrence of disease.

The database, to be known as the UK Population Biomedical Collection, will hold details of 500000 men and women volunteers, aged 45-64, including basic measurements, such as height, weight, and blood pressure, together with details of medical history and lifestyle from questionnaires.

Follow up data on the participants' health and lifestyle would be collected over succeeding years, and genetic analyses would be carried out on the volunteers by separate research groups, although the results would be held centrally to increase the value of the resource.

The report recommends that the government provide "sufficient earmarked resources to the MRC and the Department of Health to ensure that the support and infrastructure required for this important initiative are in place." Committee members said that it was urgent that the NHS should adopt uniform standards and protocols for medical records, so they could be used in research.

Human Genetic Databases: Challenges and Opportunities is accessible at www.parliament.uk

Current benefits of advances in genetics

• The BRCA2 gene is being used as a predictive diagnostic test for breast cancer

• Gene profiling of leukaemic cells has enabled better targeting of treatments

• Better understanding of gene function improves our understanding of diseasesfor example, the single gene cause of one form of muscular dystrophy affects the actions of 96 other genes

• 1100 disease related genes are documented on specialised databases, leading to new screening tests and improvements in diagnosis

• Genetic tests are available for a few drugs, such as fluoxetine, to help assess patients'suitability for treatment before prescription

• Source: Human Genetic Databases: Challenges and Opportunities