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You are in Human Genetics → Genes and the NHS → A DNA database in the NHS?

A DNA database in the NHS?

In December 2011, Prime Minister David Cameron announced new plans to share data stored in the NHS with private companies.

GeneWatch is concerned that this is the latest version of a secret plan to build a genetic database of every adult, child and baby in the NHS.

The Human Genomics Strategy Group (HGSG) and the Wellcome Trust have proposed that people would have their DNA sequenced and stored linked to electronic medical records in the NHS.

In 2009, following earlier data-sharing proposals, made but then rapidly abandoned by the New Labour Government, GeneWatch published a briefing on why this is a bad idea for both privacy and health.

Information about the new proposals can be found below.

Resources

• Consultation responses
• External links
  • Cabinet Office: Information Commissioner's Conference - Francis Maude keynote speech (6th March 2012)

• GeneWatch briefings
• Press articles
  • 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)

  • The Telegraph: National DNA database needed for personalised medicine drive (25th 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 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 Mirror: David Cameron accused of NHS free-for-all as private firms get access to patient records (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)

  • BBC: David Cameron eyes NHS-life sciences partnership (5th December 2011)

  • Huffington Post UK: Cameron: NHS Patient Data Could Be Shared With Private Companies (5th December 2011)

  • The Telegraph: Patients to get drugs from the 'valley of death' (5th December 2011)

  • UKPA: Labour demands NHS data safeguards (5th December 2011)

  • The Guardian: Cameron accused of putting NHS on sale over plans for life sciences (5th December 2011)

  • GP: Cameron to allow private companies to access patient data (5th December 2011)

  • The Sun: NHS plan 'is the death of patient privacy' (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 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: 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)

  • 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.

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Resources

• Consultation responses
• External links
• GeneWatch briefings
• Press articles
• Press releases
• Official documents