BioWorld International Correspondent
The UK’s leading independent genetics watchdog group said plans to create a national DNA database of 500,000 people should not go ahead until the law is changed to protect the rights of individual donors.
A detailed review of the proposal to set up the database, called BioBank UK, is due to be completed at the end of this month, with a final decision on funding expected in March. But the campaign group GeneWatch UK said the database should be shelved until there are clear rules on who owns an individual sample, who can have access to it, and what individuals are agreeing to when they give a sample.
The organization also called for laws to control commercial access, claiming that if, as proposed, companies have the right to use it, this could result in genetic information in the database being patented.
The issues are due to be debated this week when the House of Lords discusses the regulation of genetics databases.
The proposal to set up BioBank UK (formerly referred to as the UK Population Biomedical Collection) was made by the government research body, the Medical Research Council and the charity Wellcome Trust, early in 2000. The two committed £25 million (US$36.2 million) each to establish a collection of 500,000 tissue samples with associated lifestyle and medical information.
Over the past year primary care professionals and staff in the National Health Service have been canvassed on the project. A protocol development committee has discussed issues such as the optimal number and age range of volunteers, DNA sampling methodology, consent and feedback to participants, the diseases to be studied and the types of health and lifestyle information to be collected.
At 500,000 samples, the UK BioBank would be far larger, and hence more powerful, than other national collections such as those in Iceland and Singapore set up to identify polymorphisms involved in common diseases.
Volunteers will be followed prospectively in an effort to correlate genetic and lifestyle information with the development of disease.
The current proposal is to have a central coordinating body, while regional centers will recruit volunteers.
An independent monitoring group is proposed to protect the public interest by monitoring the storage and use of samples and information. However, GeneWatch believes this body needs to be backed up by the force of law, noting, “At the moment it is unclear who will have access to your genetic information, or when this can be disclosed to third parties such as relatives, the courts or the police.”