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.
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 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 you can contact your MP.
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.
Further information about the new proposals can be found below.
Resources
- Consultation responses
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GeneWatch UK: Response to NHS Constitution consultation
28th January 2013
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GeneWatch UK: Response to NHS Constitution consultation
- External links
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The Information Governance Review (Caldicott2) (26th April 2013)
The Caldicott2 report proposes abandoning the requirement for fully informed consent to share medical records and whole genomes for research with private companies such as Google.
- Ethics and Genetics
- Ross Anderson: Security of Clinical Information Systems
- UK Human Rights Blog: From base pairs to the bedside: medical confidentiality in a changing world (12th December 2012)
- Number 10 Press Release: DNA tests to revolutionise fight against cancer and help 100,000 NHS patients (10th December 2012)
- BIS PR: Life Sciences Strategy: one year on (10th December 2012)
- ICO: New anonymisation code sets out how to manage privacy risks and maintain transparency (20th November 2012)
- Cabinet Office: Information Commissioner's Conference - Francis Maude keynote speech (6th March 2012)
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Tim Hubbard (Wellcome Trust Sanger Centre: Genomics - current opportunities and threats (22nd February 2012)
Outlines the proposal to store the whole genome of everyone in electronic medical records in the NHS and store the data in the cloud.
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The Information Governance Review (Caldicott2) (26th April 2013)
- GeneWatch briefings
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GeneWatch UK: A DNA Database in the NHS: Your Freedom Up for Sale?
23rd May 2013
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GeneWatch UK: Presentation to the Caldicott Review
12th October 2012
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GeneWatch UK: Response to Caldicott Review: Further Information
12th October 2012
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GeneWatch UK response to the Caldicott Review
17th September 2012
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GeneWatch UK: A DNA Database in the NHS: Your Freedom Up for Sale?
- Press articles
- Pulse: NHS England allowed to share GP data outside recommended 'safe havens' (30th May 2013)
- Pharma Times: Concern over 'DNA database by stealth' in the NHS (24th May 2013)
- The Guardian: £140 buys private firms data on NHS patients (17th May 2013)
- TechEye: Your genetic make up to be stored, without consent, for profit (25th April 2013)
- New York Times: The Immortal Life of Henrietta Lacks, the Sequel (23rd March 2013)
- The Observer: Sale of personal gene data condemned as 'unethical and dangerous' (17th February 2013)
- Public Service Europe: Weighing the risks and potential of DNA databases (13th February 2013)
- The Guardian: NHS patient confidentiality 'at risk' from central database (2nd February 2013)
- Genomes Unzipped: GBP100M for whole patient genomes - revolutionising genetic diagnostics or squandering NHS cash? (1st February 2013)
- Daily Mail: Big brother to log your drinking habits and waist size as GPs are forced to hand over confidential records (1st February 2013)
- The Independent: British internet users' personal information on major 'cloud' storage services can be spied upon routinely by US authorities (30th January 2013)
- BBC: Donated genetic data 'privacy risk' (18th January 2013)
- BBC: Will Big Data DNA analysis herald new era in medicine? (17th January 2013)
- Forbes: Becoming Your Own Doctor In The Brave New World Of Personalized Medicine (17th January 2013)
- New York Times: Web Hunt for DNA Sequences Leaves Privacy Compromised (17th January 2013)
- Independent: 'White hat' hacker discovers names of 'anonymous' volunteers of genome study in security drill (17th January 2013)
- The Telegraph: GPs concerned over separated parents seeking children's medical records (4th January 2013)
- The Telegraph: One in three have online medical record, many without knowledge (31st December 2012)
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Washington Post: Health-care sector vulnerable to hackers, researchers say (25th December 2012)
Quotes Avi Rubin, a computer scientist and technical director of the Information Security Institute at Johns Hopkins University: "I have never seen an industry with more gaping security holes. If our financial industry regarded security the way the health-care sector does, I would stuff my cash in a mattress under my bed."
- Public Service Europe: A DNA database in the NHS: the end of privacy? (12th December 2012)
- Daily Mail: NHS faces privacy storm over plan to store thousands of patients' DNA to help develop life-saving treatments (10th December 2012)
- The Telegraph: Privacy fears over DNA database for up to 100,000 patients (10th December 2012)
- The Independent: 100m pound DNA mapping project for cancer patients announced (10th December 2012)
- Reuters: Britain launches genome database to improve patient care (10th December 2012)
- BBC: Cambridge to lead way in cancer patients' DNA mapping (10th December 2012)
- The Observer: Plans for NHS database of patients' DNA angers privacy campaigners (8th December 2012)
- The Guardian: Genomics revolution: UK could miss the boat, scientists warn (4th December 2012)
- HSJ: Protocol required to prevent information use 'surprises' (11th October 2012)
- E-Health Insider: EHI Live interview: Dame Fiona Caldicott (11th October 2012)
- The Guardian: NHS patient records to revolutionise medical research in Britain (28th August 2012)
- Daily Mail: Millions of patients' data to sold off for research after Cameron announces radical plan to change NHS constitution (2nd August 2012)
- The Telegraph: Olympic anti-doping centre to become medical research lab (1st August 2012)
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The Times [subscription needed]: Gene 'revolution' has stalled, says Winston (9th June 2012)
IVF-pioneer Robert Winston described the hype about the human genome as "complete balls".
- The Independent: Big fine for NHS trust over data leak (2nd June 2012)
- Public Service: NHS - living in fear of the next data scandal? (25th May 2012)
- eHealth Insider: New NHS information strategy unveiled (21st May 2012)
- Computing.co.uk: NHS information strategy gives green light to UK-wide data sharing (21st May 2012)
- Computing.co.uk: Government data sharing plans may breach Data Protection Act (1st May 2012)
- The Guardian: Government revives plan for greater data-sharing between agencies (24th April 2012)
- The Guardian: Data sharing in Whitehall must be limited by respect for private rights (24th April 2012)
- BioNews: The myth of the genomic revolution (6th February 2012)
- Pharma Times: Sanger Institute survey tests waters on genomic data use (31st January 2012)
- FierceBiotech IT: U.K. genomics database plan faces hurdles (30th January 2012)
- UKPA: DNA cancer screening plans unveiled (25th January 2012)
- BBC: Genetic testing: NHS 'must back revolution' (25th January 2012)
- Financial Times: NHS urged to adopt DNA testing (25th January 2012)
- The Telegraph: National DNA database needed for personalised medicine drive (25th January 2012)
- The Register: Concerns over plan to boost pharma by releasing NHS data (12th December 2011)
- The Guardian: How anonymous is NHS patient data? (12th December 2011)
- The Register: UK.gov to require YOU to opt out of data-sharing plan with drug firms (6th December 2011)
- Pulse: BMA raises alarm over NHS patient data sharing plans (6th Decemner 2011)
- The Guardian: Cameron accused of putting NHS on sale over plans for life sciences (5th December 2011)
- Huffington Post UK: Cameron: NHS Patient Data Could Be Shared With Private Companies (5th December 2011)
- The Sun: NHS plan 'is the death of patient privacy' (5th December 2011)
- UKPA: Labour demands NHS data safeguards (5th December 2011)
- The Mirror: David Cameron accused of NHS free-for-all as private firms get access to patient records (5th December 2011)
- GP: Cameron to allow private companies to access patient data (5th December 2011)
- Reuters: UK reforms to push use of new medicines
- The Independent: Cameron plans early access to new drugs (5th December 2011)
- The Washington Post: UK's David Cameron calls for National Health Service to make data available to industry (5th December 2011)
- Press Association: PM plans early access to new drugs (5th December 2011)
- The Telegraph: Patients to get drugs from the 'valley of death' (5th December 2011)
- BBC: David Cameron eyes NHS-life sciences partnership (5th December 2011)
- BBC: Patients' NHS records could be shared with private firms (4th December 2011)
- Daily Mail: Privacy row as NHS patient records could be shared with private companies (4th December 2011)
- The Sunday Telegraph: Animal test firms given your NHS data (4th December 2011)
- Press releases
- GeneWatch UK PR: GeneWatch UK report exposes plans to build a DNA database by stealth in the NHS 23rd May 2013
- GeneWatch UK PR: Government moves to allow DNA database of whole population to be built in NHS without consent 28th January 2013
- GeneWatch PR: Response to human genome report 25th January 2012
- GeneWatch PR: NHS data-sharing plans could lead to secret DNA database in the NHS 5th December 2011
- Official documents
- Department of Health: The power of information: Putting all of us in control of the health and care information we need (May 2012)
- Department of Health: Report highlights benefits of genomic innovation (25th January 2012)
- Human Genomics Strategy Group: Building on our inheritance: Genomic technology in healthcare (January 2012)
- The Secretary of State for Health (Mr Andrew Lansley): Life Sciences Statement (5th December 2011)
- Government Press Release: UK life sciences get government cash boost (5th December 2005)
- Government Report: Investing in UK Life Sciences (December 2011)
- Department of Health: Innovation, health and wealth (December 2011)
- BIS: Strategy for UK Life Sciences (December 2011)
- David Cameron on Life Sciences (Full Speech) (5th December 2011)
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HGC response: Gaining consent for genomic studies involving NHS patients (15th February 2011)
Contains the proposal from the Human Genomics Strategy Group to allow sequencing of DNA stored in the NHS without patients' consent.
