UK building DNA database in the NHS 'by stealth'

by jeeg 24. May 2013 21:00

The plan, which is backed by British Prime Minister David Cameron, involves sequencing the DNA of everyone in England and adding this information as an attachment to each person's medical file – warns campaigner

In April, the Caldicott Committee, including British government chief scientist Sir Mark Walport proposed new rules for data-sharing electronic medical records. What they failed to make transparent is that genetic information including whole genomes will be integrated into medical records in the future - as part of a plan proposed by the Wellcome Trust, of which Walport used to be director.

The plan, which is backed by United Kingdom Prime Minister David Cameron, involves sequencing the DNA of everyone in England and adding this information as an attachment to each person's medical file. The data will then be shared with commercial companies including private healthcare companies, the pharmaceutical industry and web-based companies such as Google; without people's knowledge or consent. Claims by the Cameron administration that the data will be "anonymised", by removing names, are completely meaningless because identities could be deduced from other information - such as age, medical conditions and postcode or by comparing genomes with DNA taken from a person's coffee cup or with information stored in public databases. Following statistical analysis of stored data, risk predictions made using computer algorithms will be fed back to individuals telling them the diseases they are expected to develop in the future. 

It raises serious concerns about government surveillance because it amounts to building a DNA database in the National Health Service by stealth. As well as commercial companies, the police, security services and government departments will be able to track every individual and their relatives. The data will be stored by the new Health and Social Care Information Centre and sold to private companies and government-run institutes worldwide - from the United States to China. Other personal records stored by the government, for example, from social care and education will be linked to people's electronic medical records and also shared in future. There is also a danger that risk predictions will lead to stigma and discrimination from insurers and employers.

The objective of the plan is the 'creative destruction' of the NHS so that every individual has a personalised risk assessment from birth to death. If people agree to feedback of their health risk predictions, they will be made available online where they can be used for personalised marketing. This is expected to massively expand the healthcare market because everyone will become a patient from the 'cradle to the grave', even when they are not ill. The aim is to transform the NHS in line with proposals developed more than a decade ago by former GlaxoSmithKline chairman Sir Richard Sykes. He argued that genetic testing combined with "pre-symptomatic" medication would massively expand the drug market for healthy people. Sykes' model for the NHS would allow patients to pay for extra medicines outside state funding, while keeping the public health service only as a basic service for people who are ill; therefore, allowing the pharmaceutical industry to increase its profits.

Building a DNA database in the NHS requires enormous resources to be sunk into collecting and storing data, which is likely to be of limited value to most people's health because genes are poor predictors of most diseases in most people. Clinically useful data is likely to be swamped with clinically useless data that requires significant financial and energy resources to collect and store. Doctors are expected to be replaced by computer algorithms. These will recommend prescriptions, removing the role of the medical profession as gatekeepers to care and putting control over diagnosis and predictions in the hands of commercial companies.

The British PM appears to have been persuaded to adopt the Wellcome Trust's plan because it will attract significant capital investment in the form of public-private partnerships and this is supposed to lead to economic growth. Asia's richest man Sir Li Ka Shing is already an investor, via a public-private partnership with Oxford University - and the Google-funded gene testing company 23andMe has a major interest in gaining access to the data. However, private sector investment will expect a high rate of return while the ongoing cost for taxpayers is likely to be high - and the return is only the claimed future benefit to health. Something that is unlikely to be realised. Much of the data-mining could be done overseas and profits could be banked offshore. Taxpayers' money will be sunk up-front in whole genome sequencing for everyone but these investments are not accountable to customers - the people who have their DNA sequenced - because they have no choice; or to taxpayers because the plan has not been democratically debated and decided.

In our view, the government's plan shows a shocking disregard for democratic processes and for people's right to choose where their personal and genetic information can end up, and how it can be used. People with concerns about this plan should contact their MPs before their healthcare data is uploaded from their GP to the Health and Social Care Information Centre later in the year.

Dr Helen Wallace is director of the GeneWatch UK campaign Group

 

 

 

 

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