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Universal DNA database - Britain changes tack

[Hat tip: The ARCH Blog]

In 2008 the European Court of Human Rights held that holding the DNA samples of people who had never been convicted of a crime was a breach of their right to privacy, thus bringing into question the policy of indefinitely holding of DNA samples of over 570,000 people who were never convicted of any crime.

Despite this, the government has indicated that it intends to store DNA samples in an NHS database:

The Connecting For Health register – due to come online in 2012 – will hold the electronic medical records of everyone in the UK.

But many fear it will breach patient confidentiality, as a million doctors, nurses and receptionists will have access to it. The surprising admissions came out of a House of Lords inquiry into genetic medicine last month.

When asked if it was ‘valuable to combine genetic data with personal medical data’, Prof Davies replied: ‘The Government is absolutely determined to exploit this research opportunity.’

When Ms Primarolo was asked if it was likely the database would one day hold patients’ DNA, she said: ‘I think the long-term objective would be yes.’

Furthermore, Genewatch points out the Coroners and Justice Bill contains powers to create such a database by stealth (from www.publicservice.org.uk):

A nationwide DNA database could be created by stealth, a report has warned, because of the new data sharing proposals currently passing through parliament.

A GeneWatch report has warned that the DNA collected for medical purposes in the newborn screening programme could be shared with the national DNA database without any need of further legislation.

The Coroners and Justice Bill, which is currently going through the parliamentary debate process, includes proposals for Information Sharing Orders. These allow any government data to be shared for reasons other than its initial purpose. As it stands, the Data Protection Act requires data to only be used for the purpose it was first taken.

GeneWatch said that if the new data sharing proposals are voted in, then the government could implement this plan via an Information Sharing Order without parliamentary oversight. Instead all Information Sharing Orders will be scrutinised by the Information Commissioner, with his opinion available to MPs in writing, and will also face a Privacy Impact Assessment.

Meanwhile, the Times reports:

Every baby born a decade from now will have its genetic code mapped at birth, the head of the world’s leading genome sequencing company has predicted.

A complete DNA read-out for every newborn will be technically feasible and affordable in less than five years, promising a revolution in healthcare, says Jay Flatley, the chief executive of Illumina.

Only social and legal issues are likely to delay the era of “genome sequences”, or genetic profiles, for all. By 2019 it will have become routine to map infants’ genes when they are born, Dr Flatley told The Times.

This will open a new approach to medicine, by which conditions such as diabetes and heart disease can be predicted and prevented and drugs prescribed more safely and effectively.

The development, however, will raise difficult questions about privacy and access to individuals’ genetic records. Many people may be reluctant to have their genome read, for fear that the results could be used against them by an employer or insurance company.

So we have a stated government intention to create a DNA database storing samples from every person, proposed legal powers that could be used to achieve it with the barest minimum parliamentary scrutiny, plus a private company claiming the technology will soon be in place to do it.

It thus seems to me this will happen unless people act to stop it.

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