A DNA database in the NHS?

The Human Genomics Strategy Group (HGSG) and the Wellcome Trust have proposed that everyone in the NHS should have their DNA sequenced and stored linked to electronic medical records in the NHS, building a DNA database of the entire population. You can see the plan in this presentation.

The Government has backed this plan and Health Secretary Jeremy Hunt has stated that every baby should have its whole genome sequenced at birth. The Government has already identified partners and investors (including Google and Asia's richest man) and started to build the infrastructure to create the database. The first step is to upload all the medical records in NHS England from people's GPs to a central database called the Health and Social Care Information Centre.

A GeneWatch UK report details the Government's support for this proposal and its plans to build a DNA database in the NHS in England by stealth (Scotland, Wales and Northern Ireland will make their own decisions because health powers are devolved). The plan would allow every individual and their relatives to be tracked by security agencies worldwide and the data will be sold to private companies, such as Google, for commercial exploitation without people's knowledge or consent. Read the press release and article in Public Service Europe.

If you are concerned about this plan please visit the what you can do page. It is urgent to opt out of your medical records being uploaded and shared, as it is likely to be impossible to withdraw later on once your medical record has been stored in the cloud or sent overseas.

An article in The Scientist explains why whole genome sequencing is rarely useful for people's health. However, the plan to provide every person in the NHS with a personalised risk assessment is expected to lead to a massive expansion in the market for drugs and other products, such as supplements and cholesterol-lowering margerines, which can be sold using personalised marketing based on an individual's health data.

If this plan goes ahead, every individual and their relatives could be tracked using their DNA.

This is the latest version of a secret plan to build a genetic database of every adult, child and baby in the NHS. You can read the history of this idea here.

The Government's plans for the 100,000 genomes project have been published. The project is a pilot study for sequencing the genomes of the whole population. The "ethics" report proposes that noone will be able to have genetic data collected without it being shared with government-funded institutes and private companies worldwide without people's knowledge or consent.

The Financial Times has reported that the EU-US "safe harbour" agreement which would allow NHS data and genomes to be handed over to US companies such as Google-funded 23andMe, may be scrapped or reviewed as a result of the NSA spying revelations. This could affect the Government's plan to share NHS data and genomes with US companies such as Google and 23andMe.

A new data protection law supported by the European Parliament would prevent heath data being shared for "research" (including commercial data-mining) without people's consent. But it has yet to gain the support of the Council, which includes the UK Government and is opposed by many internet companies who are lobbying against it.

Further information about the new proposals can be found below.


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