A DNA database in the NHS?

In 2011, 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. This section discusses what happened regarding the proposal at the time. Subsequently, the EU's General Data Protection Regulation (GDPR), adopted in 2016, prevented a DNA database being built within the NHS without consent. However, there continue to be proposals to undermine these safeguards.

The Government backed the plan and Health Secretary Jeremy Hunt stated that every baby should have its whole genome sequenced at birth. The Government identified partners and investors (including Google and Asia's richest man) and started to build the infrastructure to create the database. The first step was 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 then 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.

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 went ahead, every individual and their relatives could be tracked using their DNA.

This was 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.

Subsequently, the EU's General Data Protection Regulation (GDPR) prevented a DNA database being built within the NHS without consent. However, there continue to be proposals to undermine these safeguards.

Further information about the 2011 proposals can be found below.

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