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.
Resources
- Consultation responses
- GeneWatch UK response to BIS consultation on investment in science infrastructure (July 2014) 1st July 2014
- GeneWatch UK response to the Ministry of Justice consultation on EU powers and Information Rights 30th June 2014
- GeneWatch UK submission to the Nuffield Council on Bioethics' consultation on biodata 8th January 2014
- GeneWatch response to the NHS mandate consultation 26th September 2013
- GeneWatch UK: Response to NHS Constitution consultation 28th January 2013
- GeneWatch UK: Response to Caldicott Review: Further Information 11th October 2012
- GeneWatch UK: Presentation to the Caldicott Review 11th October 2012
- GeneWatch UK response to the Caldicott Review 16th September 2012
- GeneWatch briefings
- GeneWatch UK Briefing: The Generation Study: Is genome sequencing good for babies? 31st July 2024
- GeneWatch UK Briefing: Data Protection or exploitation? The erosion of safeguards for health and genetic research 26th May 2015
- GeneWatch UK: A DNA Database in the NHS: Your Freedom Up for Sale? 22nd May 2013
- Press releases
- GeneWatch UK PR: Genetic information is irrelevant to most people's care 3rd June 2014
- GeneWatch UK PR: GeneWatch UK report exposes plans to build a DNA database by stealth in the NHS 22nd 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: Government responds on cyber security and data (12th July 2017)
- Council of the EU: Consolidated text Data Protection (Annexes) (12th June 2015)
- Council of the EU: Consolidated text Data Protection (11th June 2015)
- NHS England: CCGs to help develop care.data programme (7th October 2014)
- LIBE Committee Report on Data Protection Regulation (21st November 2013)
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ICO: Statement on care.data (October 2013)
Announces that data extraction for the care.data system will not begin until Spring 2014, to allow more time for public communication.
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HSIC: General Practice Extraction Service (GPES) Addendum NIC - 178106 - MLSWX.A0913 (September 2013)
Details plans to share "potentially identifiable data" from individuals' medical records without their consent with commercial companies for purposes including developing "predictive risk models".
- Department of Health: Information: To Share or not to Share: Government Response to the Caldicott Review (12th September 2013)
- Department of Health: Mapping 100,000 genomes: strategic priorities, data and ethics (4th July 2013)
- 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)
- 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.
- 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)
- Press articles
- The Guardian: 'Race science' group say they accessed sensitive UK health data (17th October 2024)
- BBC: Patient data transfer still set to start in July (5th June 2021)
- The Times: Alarm at 'secret' NHS meeting with tech firms on sharing patient data (31st December 2019)
- New Scientist: Sequencing the genome of every UK baby would be an ethical minefield (7th November 2019)
- Pulse: DNA testing plans to 'brand' children at birth without their consent (6th November 2019)
- The Telegraph: All children to receive whole genome sequencing at birth, under ambitions laid out by Matt Hancock (5th November 2019)
- The Guardian: NHS abandons plan to let healthy people pay for DNA sequencing (25th July 2019)
- ITV: Big tech firms cannot be trusted with anonymous NHS data, survey suggests (8th June 2019)
- The Times: Make no mistake, one way or another NHS data is on the table in America trade talks (8th June 2019)
- Computer Weekly: Public opposes exploitation of NHS data by large tech companies (8th June 2019)
- Open Democracy: NHS data is a public asset. Why does Matt Hancock want to give it away? (26th April 2019)
- The Independent: ‘Astonishing level of ignorance’: Matt Hancock criticised for revealing results of his genetic test for diseases (21st March 2019)
- The Guardian: The NHS should run a mile from the genome sequencing goldrush (7th February 2019)
- BBC: NHS to offer paid-for DNA tests if patients share data (26th January 2019)
- The Guardian: NHS to sell DNA tests to healthy people in push to find new treatments (26th January 2019)
- The Independent: Fitness trackers and genetic tests will send 'worried well into hyperdrive', warn surgeons as health secretary pledges tech push (14th September 2018)
- Bionews: Report warns against universal screening of babies' genomes (20th August 2018)
- Medical Republic: Can we really trust big tech with our health data? (15th August 2017)
- BBC: UK data protection laws to be overhauled (7th August 2017)
- Daily Mail: Is handing your DNA to the NHS REALLY the best way to beat cancer? (7th July 2017)
- BBC: Google NHS deal rebuked again by DeepMind panel (5th July 2017)
- Newsweek: Google Could Soon Have Access Sensitive Genetic Patient Data - We Should All Be Worried (4th July 2017)
- The Telegraph: UK plc urged to seize 'global opportunity' in genomics (4th July 2017)
- The Guardian: Royal Free breached UK data law in 1.6m patient deal with Google's DeepMind (3rd July 2017)
- The Verge: Google’s AI subsidiary was given ‘legally inappropriate’ access to UK medical data (16th May 2017)
- Sky News: Google received 1.6 million NHS patients' data on an 'inappropriate legal basis' (15th May 2017)
- pharmaphorum: Regeneron and GSK to sequence UK genetic data (23rd March 2017)
- BBC: Google DeepMind's NHS deal under scrutiny (17th Mach 2017)
- Wired: DeepMind accused of 'inexcusable' failings in its data deal with the NHS (16th March 2017)
- Digital Health: Move to implement patient 'data lake' scheme (30th January 2017)
- Digital Health: New national NHS patient "data lake" proposed based on STPs (19th January 2017)
- Digital Health: Google Deepmind and Imperial in streams deal (22nd December 2016)
- New Scientist: Google's DeepMind agrees new deal to share NHS patient data (22nd November 2016)
- Wired: DeepMind hits back at criticism of its NHS data-sharing deal (22nd November 2016)
- Daily Mail: NHS agrees to hand over 1.6MILLION patient records to Google in controversial five year data deal to develop a new mobile app they claim could 'save 10,000 lives a year' (22nd November 2016)
- Google DeepMind inks 5-year agreement with NHS for 'Streams' app (22nd November 2016)
- FT: Fears raised over Google's DeepMind deal to use NHS medical data (22nd November 2016)
- BBC: NHS using Google technology to treat patients (22nd November 2016)
- Digitalhealth.net: Google DeepMind and Royal Free in five-year deal (22nd November 2016)
- The Sun: GOOGLE DOC DEAL Tech giant Google awarded controversial data deal that gives them access to over 1.5million NHS patient records in new scheme (22nd November 2016)
- BBC: Google Deepmind: Should patients trust the company with their data? (23rd September 2016)
- BBC: Why Google wants your medical records (19th July 2016)
- ITPro: NHS axes care.data scheme (7th July 2016)
- Daily Mail: Controversial GBP8m NHS project to harvest the medical files of millions of patients is finally scrapped (6th July 2016)
- BBC: NHS data-sharing project scrapped (6th July 2016)
- New Scientist: Google's new NHS deal is start of machine learning marketplace (6th July 2016)
- Telegraph: Controversial £50 million NHS database scrapped quietly on same day as Chilcot Report (6th July 2016)
- The Register: UK patients should have greater data slurp opt-out powers - report (6th July 2016)
- The Register: UK.gov's hated Care.data project binned (6th July 2016)
- BBC: Google's DeepMind to peek at NHS eye scans for disease analysis (5th July 2016)
- BBC: Privacy Shield: White House makes EU spying promise (24th June 2016)
- TechCrunch: NHS memo details Google/DeepMind's five year plan to bring AI to healthcare (8th June 2016)
- TechCrunch: UK healthcare products regulator in talks with Google/DeepMind over its Streams app (18th May 2016)
- BBC: Google given access to London patient records for research (3rd May 2016)
- Daily Mail: Google handed patients' files without permission: Up to 1.6million records - including names and medical history - passed on in NHS deal with web giant (3rd May 2016)
- New Scientist: Revealed: Google AI has access to huge haul of NHS patient data (29th April 2016)
- Computer World UK: NHS care.data records still being shared with third parties due to Department of Health delays (14th April 2016)
- Independent: EU data protection regulation passes in Brussels giving citizens right to be forgotten online (14th April 2016)
- BBC: EU watchdogs demand revisions to Safe Harbour replacement (13th April 2016)
- New Scientist: Hands off our health records, say 1 in 6 UK adults (9th March 2016)
- The Register: Brits still not happy about commercial companies using their healthcare data (9th March 2016)
- BBC: Theresa May refuses to say whether UK spies access medical data (13th January 2016)
- The Scientist: Toward Protecting Participants' Privacy (29th October 2015)
- Science Codex: Stanford researchers identify potential security hole in genomic data sharing network (29th October 2015)
- New York Times: Behind the European Privacy Ruling That's Confounding Silicon Valley (9th October 2015)
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BBC: Facebook data transfers threatened by Safe Harbour ruling (6th October 2015)
Reports on the ECJ's ruling that data transfers to the USA using the "safe harbour" agreement are invalid. This will also affect plans to send health data or genomes to the USA.
- BBC: NHS-approved apps found 'leaking' ID data (25th September 2015)
- The Guardian: Doctors voice concerns over plan for greater patient access to medical records (2nd September 2015)
- BBC: London clinic leaks HIV status of patients (2nd September 2015)
- The Mirror: Medical records hacking fear as Jeremy Hunt announces plans to put data on smartphones (2nd September 2015)
- The Telegraph: Personal health data belongs to patients (11th August 2015)
- The Independent: Pharmacies to be given access to people's medical records under NHS England plans (9th August 2015)
- The Telegraph: Sharing all our personal data is stupid and dangerous (10th August 2015)
- Computing: NHS England plans to hand over medical records to high-street retailers (10th August 2015)
- Daily Mail: Now Tesco has access to your medical records: Chemists at supermarket pharmacies to be allowed to access data in attempt to boost care standards (10th August 2015)
- The Telegraph: Boots, Tesco and Superdrug to get access to NHS medical records (9th August 2015)
- Telegraph: Boots, Tesco and Superdrug to get access to NHS medical records (9th August 2015)
- Kable: NHS England denies seeking patient data from software groups (22nd July 2015)
- HSJ: Care.data opt out ignored by commissioners, campaigners claim (29th July 2015)
- Pulse: Almost 2% of patients have opted out of care.data before awareness campaign begins (24th July 2015)
- Daily Mail: NHS backs down over private data: Demands for millions of confidential files are abandoned after leaked letter sparks privacy row (22nd July 2015)
- BT: NHS privacy concerns raised after bid to collect GP appointments data (21st July 2015)
- Express: NHS boss demands health information for MILLIONS of Britons - and it could identify YOU (21st July 2015)
- Computing: NHS denies personal information will be shared in appointments row (21st July 2015)
- Pulse: NHS England requests data on GP appointments to support case for seven-day working (21st July 2015)
- Motherboard: The UK's Plan to Sequence 100,000 Human Genomes (17th July 2015)
- Government Computing: Care.data trial practices unveiled as objection concerns remain (13th July 2015)
- The Guardian: What happens when policy is made by corporations? Your privacy is seen as a barrier to economic growth (12th July 2015)
- Pulse: Just 12 GP practices sign up to test care.data in largest pilot region (8th July 2015)
- The Register: NHS IT failures mount as GP data system declared unfit for purpose (2nd July 2015)
- Computing: Care.data, NHS Choices and now Apps - could it be three failures in a row for Tim Kelsey? (30th June 2015)
- The Guardian: NHS patient data plans unachievable, review finds (26th June 2015)
- The Telegraph: NHS patients to be monitored remotely in digital healthcare revolution (17th June 2015)
- TechCrunch: European Ministers Agree To Disagree On Data Protection Reform (15th June 2015)
- Money Digest: The Costs of Sharing Medical Records (15th June 2015)
- IT Pro: Care.data scheme due to restart despite ongoing privacy concerns (12th June 2015)
- Computer Business Review: NHS faces backlash over Care.data restart in Blackburn (12th June 2015)
- Computer Weekly: Controversial NHS England Care.data project set to restart (11th June 2015)
- Pulse: GPs prepare to contact patients individually as care.data is relaunched in some areas (10th June 2015)
- FierceBiotech IT: U.K. overrun by requests to opt out of health data sharing program (8th June 2015)
- Empire State Tribune: HSCIC patient preference to keep their medical data private put on hold (6th June 2015)
- ITV: Confidential NHS patient data being passed on 'against wishes' (6th June 2015)
- EurActiv: Buttarelli: No compromise on data protection reform (2nd June 2015)
- The Register: NHS blows 5 MILLION pounds on delayed Care.data (2nd June 2015)
- Pulse: NHS overriding 700,000 patient opt-outs to GP data being shared (5th May 2015)
- Daily Mail: Could Google look after our NHS data? (4th May 2015)
- Daily Mail: Your secrets for sale: Now the NHS is in the dock after it's revealed details of patients who bought prescriptions online are sold off (31st March 2015)
- BioNews: Genomics England forms industry collaboration (30th March 2015)
- Daily Mail: After Mail exposes trade in sensitive pension details... Now they are selling your health secrets (30th March 2015)
- EurActiv: Brussels makes overture on 'data flow' agreement in TTIP (20th March 2015)
- The Guardian: Privacy and the 100,000 Genome Project (10th March 2015)
- Computing: Government has failed to provide guidelines on use of biometric data, warn MPs (9th March 2015)
- The Register: Holyrood votes for 'creeping use' of NHS data (9th March 2015)
- Pulse: Independent oversight body for care.data to be scrapped (4th March 2015)
- EHI News: Care.data on hold until election (3rd March 2015)
- Kable: NHS England to launch care.data standards testing within weeks (3rd March 2015)
- Government Computing: Clarification concerns leave Caldicott unsure of care.data timing (10th February 2015)
- Pulse: Majority of care.data pilots expected to begin 'before May' (10th February 2015)
- Daily Mail: Hackers could target drugs database planned by the EU threatening patient confidentiality, experts warn (7th February 2015)
- The Independent: Government told to make it easier to opt out of care.data database (3rd February 2015)
- The Guardian: 'Public should be consulted on NHS medical data-sharing scheme' (3rd February 2015)
- Science 2.0: Science 2.0: Public Buy-In - And Penalties For Misuse - Essential For Big Data Success (2nd February 2015)
- Government Computing: ICO given expanded health data audit powers (2nd February 2015)
- The Register: Care.data refuseniks will be DENIED CANCER SCREENING invites (28th January 2015)
- The Independent: 'Anonymous' NHS database could still allow patients to be identified, expert warns (26th January 2015)
- The Guardian: NHS disregards patient requests to opt out of sharing medical records (22nd January 2015)
- MIT Technology Review: Geneticists Begin Tests of an Internet for DNA (17th December 2014)
- Computing: MPs say Care.data programme should be put on hold (12th December 2014)
- The Register: What future is there for UK's Care.data info sharing scheme? (12th December 2014)
- Computer Weekly: Care.data faces more delays over concerns about patients (12th December 2014)
- ScienceBusiness: Data protection law will not harm medical research, says MEP (10th December 2014)
- The Telegraph: NHS to carry on selling patient records to insurers (27th November 2014)
- The Guardian: NHS medical records to be stored in regional data centres (7th October 2014)
- Daily Mail: Storm as NHS gives go-ahead to patient database despite concerns: Pilot scheme will involve 1.7million people unless an individual specifically opts out (7th October 2014)
- Oxford Mail: Private firms shouldn’t have access to patients’ records’ (12th September 2014)
- Stats Life: Confidentiality costs (27th August 2014)
- Government Computing: Legal reform key to health department patient data drive (7th August 2014)
- Science Insider: U.K.'s 100,000 Genomes Project gets GBP300 million to finish the job by 2017 (1st August 2014)
- The Register: Google to feed machines with evidence of human physical weaknesses – and that's a good thing (25th July 2014)
- NewsWeek: The government owns your DNA. What are they doing with it? (24th July 2014)
- The Independent: Thousands of NHS patients to have DNA sequenced to help cancer research (21st July 2014)
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The Guardian: Corporate armies, drone terrorism, laser weapons - MoD's vision of future (11th July 2014)
Reports a study by the Ministry of Defence saying that targeting people by their DNA may be possible by 2045.
- The Guardian: Home Office accessing NHS records to help track down illegal immigrants (13th July 2014)
- Computing: NHS data governance in critical condition (27th June 2014)
- PC Pro: Doctors: NHS data sharing must be opt in (26th June 2014)
- The Telegraph: NHS guilty of 'unacceptable' lapses in sale of patient information to private sector (17th June 2014)
- The Guardian: NHS patient data audit uncovers 'significant lapses' in confidentiality (17th June 2014)
- ComputerWeekly: HSCIC tightens controls over patient data following data lapse (17th June 2014)
- Pulse: Government shared patient data with no record of recipient (17th June 2014)
- ITProPortal: In wake of care.data debacle, HSCIC comes up with secure patient data platform (17th June 2014)
- BBC: NHS patient information in data breach by Diagnostic Health (16th June 2014)
- Government Computing: HSCIC to create patient data security plan (13th June 2014)
- Pulse: NHS IT leaders consider limiting parents' access to online records (13th June 2014)
- Policy Review: Genetic testing of citizens opens the door to total population surveillance by governments and companies (5th June 2014)
- Independent Science News: Genetic Testing of Citizens Is a Backdoor into Total Population Surveillance by Governments and Companies (5th June 2014)
- Independent Science News: Genetic Testing of Citizens Is a Backdoor into Total Population Surveillance by Governments and Companies (5th June 2014)
- The Guardian: New NHS boss: service must become world leader in personalised medicine (4th June 2014)
- Motherboard: The Genome's Big Data Problem (4th June 2014)
- Daily Mail: Insurance giants spy on medical history of thousands: Britain's biggest insurers demand unnecessary information from NHS (28th May 2014)
- Pulse: GPs vote in favour of an opt-in system for care.data (23rd May 2014)
- Fierce Biotech: U.K. tries to revive 'dead duck' patient data sharing plan (12th May 2014)
- Press Association: Medical records plan 'a dead duck' (7th May 2014)
- Health Service Journal: Patient data probes to report 'within weeks' (30th April 2014)
- TechPresident: England's Care.data Fiasco: Open Government Data Done Wrong (21st April 2014)
- TechPresident: England's Care.data Fiasco: Open Government Data Done Wrong (21st April 2014)
- BBC: NHS Care.data information scheme 'mishandled' (18th April 2014)
- Pulse: Identifiable patient data lost on three occasions since 2009 by Government information centre (9th April 2014)
- IT Pro: NHS to embark on GBP230m GP IT services upgrade (4th April 2014)
- Diginomica: NHS England attempts (another) digital overhaul with £230m investment in IT (4th April 2014)
- Pharma Times: HSCIC register of data releases launched (4th April 2014)
- HSJ: Information Centre urged DH to intervene in Care.data last year (3rd April 2014)
- BBC: List of bodies accessing NHS patient data released (3rd April 2014)
- Daily Mail: Hospital data sold without patients' consent to boost profits of private drugs companies (3rd April 2014)
- The Telegraph: Drugs companies buy NHS patient data, register reveals (3rd April 2014)
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The Times: Google pulls out of secret deal to show data on NHS hospitals (1st April 2014)
Subscription required. Reports that Google has pulled out of secret talks with the Department of health to include NHS data within its search results.
- HSJ: Exclusive: Patient leader warning over Care.data timetable (1st April 2014)
- Forbes: Alarm Over The 'Gold Rush' For Citizens' Big Data (29th March 2014)
- InfoSecurity-Magazine: NHS Care.data PR Fiasco Continues as Google Pulls Out of Secret Deal (24th March 2017)
- ITProPortal: ICO will get new powers to keep the NHS in line over data security
- Government Technology: Google Invites Geneticists to Upload DNA Data to Cloud (18th March 2014)
- GigaOm: Web firms face a strict new set of privacy rules in Europe - here's what to expect (12th March 2014)
- Newsweek: Hacking Your DNA (12th March 2014)
- The Guardian: Taking better care of health data [Letters] (4th March 2014)
- Wired: NHS patient data made publicly available online (3rd March 2014)
- Fierce Biotech: U.K. begins trying to rebuild trust in patient database after months of 'confusion, suspicion and anxiety' (3rd March 2014)
- Pulse: Legislation will prevent patient data being sold outside the health service, says Hunt (3rd March 2014)
- The Guardian: NHS England patient data 'uploaded to Google servers', Tory MP says (3rd March 2014)
- The Independent: Hospital records used to 'target ads on Twitter and Facebook' say privacy campaigners, in latest NHS data concerns (3rd March 2014)
- The Telegraph: NHS legally barred from selling patient data for commercial use (3rd March 2014)
- The Guardian: Fears of patient data leak prompt inquiry into mapping website (3rd March 2014)
- The Independent: NHS chief Sir David Nicholson's experimentations with Twitter cause upset again as he posts a spoof video comparing one of his top officials to Hitler (28th February 2014)
- Daily Mail: NHS boss apologises for posting spoof Nazi video portraying senior colleague as Hitler and lampooning Health Secretary Jeremy Hunt (28th February 2014)
- The Guardian: Care.data is in chaos. It breaks my heart (28th February 2014)
- The Independent: Letters: NHS data-share a classic British mix-up (27th February 2014)
- The Independent: Atos to work on NHS care data project despite ongoing 'mess' over disability benefit assessments (26th February 2014)
- Pulse: Three in four GPs believe care.data should be 'opt in' (26th Fberuary 2014)
- The Mirror: Controversial health data-sharing scheme awarded to under-fire Atos (26th February 2014)
- The Register: NHS England tells MPs: 'The state isn't doing dastardly things with GP medical records' (26th February 2014)
- The Telegraph: Atos awarded contract for NHS records (25th February 2014)
- ComputerWorld: Westminster View: The government must address the problems with care.data, not just delay (25th February 2014)
- BBC: Hunt challenged over patient-data sharing scheme delays (25th February 2014)
- BBC: NHS data-sharing project at risk, say MPs (25th February 2014)
- The Guardian: MPs' anger at missing data on who has patient records (25th February 2014)
- The Telegraph: Hospital records of all NHS patients sold to insurers (24th February 2014)
- GP Online: What next for care.data? (24th February 2014)
- The Guardian: Hospital records of 47m NHS patients obtained by insurance society (24th February 2014)
- BBC: Medical records rules broken, NHS admits (24th February 2014)
- The Guardian: Firm linked to drug makers sought pact on access to patient records database (24th February 2014)
- Time: Brazil Plans Underseas Cable to Europe to Avoid U.S. Snooping (24th February 2014)
- The Telegraph: Patient records should not have been sold, NHS admits (24th February 2014)
- BBC: Critics of giant NHS database 'are scaremongering' (21st February 2014)
- TechWeekEurope: Care.data: Government's Medical Database Plans Delayed (19th February 2014)
- Wired: Common sense prevails as confusing Care.data is delayed (19th February 2014)
- BBC: Care.data: How did it go so wrong? (19th February 2014)
- Computer Weekly: The lesson from the NHS Care.data row: You can't keep privacy issues private any more (18th February 2014)
- The Guardian: NHS in England delays sharing of medical records (18th February 2014)
- The Telegraph: NHS medical records database halted amid concerns (18th February 2014)
- BBC: Giant NHS database rollout delayed (18th February 2014)
- The Independent: Victory for privacy as NHS database is delayed (18th February 2014)
- Daily Mail: NHS delays plan to harvest your details: Victory for the Mail as database is shelved for six months (18th February 2014)
- The Telegraph: NHS crisis talks over introduction of patients' records database (17th February 2014)
- Daily Mail: Now doctors' union has 'grave doubts' over plan to harvest patient data: British Medical Association warns public has been left in the dark over the scheme (17th February 2014)
- The Telegraph: NHS admits new medical records database could pose privacy risk (17th February 2014)
- Daily Mail: Two-thirds oppose plans for new NHS database that will see confidential medical records sold to private firms (16th February 2014)
- Daily Mail: 8 in 10 GPs baffled by plan to harvest patients' records (16th February 2014)
- Politics.co.uk: Comment: How Jeremy Hunt plans to sell your NHS records (14th February 2014)
- Derby Telegraph: Watch out for insidious NHS information scheme (14th February 2014)
- Daily Mail: GPs warn of crisis in public confidence over NHS database: Royal College warns health service of failing to inform patients about data sharing (13th February 2014)
- The Telegraph: 'Crisis of confidence' in NHS database, warn GPs (12th February 2014)
- BBC: GPs voice fears over giant patient records database (12th February 2014)
- Computing: GP revolt against sale of patient data gathers pace as health trusts threaten the sack (7th February 2014)
- Wired: The communication of Care.data to patients has been an absolute shambles (7th February 2014)
- The Independent: Patient confidentiality 'to be breached by police': NHS database to be made available to investigators, claims former shadow Home Secretary David Davis (7th February 2014)
- Wired: Thanks to Care.data, your secrets are no longer safe with your GP (7th February 2014)
- Daily Mail: NHS bosses are bullying GPs into sharing their patients' data, say MPs: Scheme described as a 'frankly disgraceful' treatment of patient confidentiality (7th February 2014)
- Pulse: Care.data will allow police access to patient records without informing GPs (7th February 2014)
- CBR: Is the new NHS data scheme safe? (6th February 2014)
- Ehealth Insider: NHS will be dependent on EHRs - Hunt (6th February 2014)
- Daily Mail: I won't give in to the NHS Thought Police who want to sell your private medical records: GP threatened by health chiefs hits back (6th February 2014)
- The Guardian: Police will have 'backdoor' access to health records despite opt-out, says MP (6th February 2014)
- InfoSecurity Magazine: The Debate Over NHS Pseudonymized Patient Data Grows (6th February 2014)
- Daily Mail: NHS 'bullies' threaten to axe GP for keeping his patients' records private: He opts his entire practice out of scheme to harvest medical data (5th February 2014)
- The private medical records sparking a very public row (5th February 2014)
- Daily Mail: GPs revolt on patient records: Growing anger at NHS plan to harvest private data (5th February 2014)
- The Guardian: NHS admits it should have been clearer over medical records-sharing scheme (4th February 2014)
- BCS: NHS England 'not clear enough' to patients about care.data opt-out (4th February 2014)
- InfoSecurity Magazine: NHS Website Not Hacked, Just Exploited (4th February 2014)
- BBC: Giant patient records database 'should be delayed' (4th February 2014)
- The Register: 'Maybe we haven't been clear enough about med records opt-out', admits NHS data boss (4th February 2014)
- The Guardian: Why we should opt out of the Government's new patient database (31st January 2014)
- Pulse: GP survey reveals extent of care.data ignorance among patients and staff (31st January 2014)
- UKAuthority: Crunch time for care.data campaign (13th January 2014)
- McGill Daily: Written in your genes (27th January 2014)
- BBC: Are your medical records in danger? (28th January 2014)
- Salon: A genetic "Minority Report": How corporate DNA testing could put us at risk (26th January 2014)
- The Observer: Why your health secrets may no longer be safe with your GP (26th January 2014)
- EU Observer: EU data bill delayed until after May elections (24th January 2014)
- Pulse: MP tables motion to halt care.data rollout as 2,400 patients call helpline (22nd January 2014)
- The Independent: Patients will be identifiable when firms are given access to confidential NHS data, experts warn (20th January 2014)
- Computer Weekly: NHS England database raises privacy concerns (20th January 2014)
- The Telegraph: EU proposals could outlaw giant NHS database (20th January 2014)
- Aol: Health database sparks privacy fear (20th January 2014)
- The Telegraph: Don't mislead us about our NHS medical records (20th January 2014)
- Northants Telegraph: Northants Labour unhappy with NHS data-storing plan (20th January 2014)
- Daily Mail: Soaring sales of 'dangerous' do-it-yourself DNA test kits: Number of websites selling products doubles in two years (20th January 2014)
- The Guardian: Why you should be angry about changes to NHS patient data policy (20th January 2014)
- Health Service Journal: Health database sparks privacy fears (20th January 2014)
- Health Service Journal: Governance concerns over care.data project (20th January 2014)
- The Guardian: NHS patient data to be made available for sale to drug and insurance firms (19th January 2014)
- Nature: Power to the people (15th January 2014)
- Pulse: GPs urged to 'proactively' support NHS data-sharing publicity campaign starting next week (6th January 2014)
- The Register: NHS carelessly slings out care.data plans to 26.5 million Brits (6th January 2014)
- North Devon Journal: Home owners in Devon to be sent leaflet detailing major NHS changes (6th January 2014)
- Kidderminster Shuttle: NHS information sharing leaflets to be delivered to Wyre Forest residents (6th January 2014)
- BBC: Patient data to be collected from GPs (6th January 2014)
- The Westmorland Gazette: Leaflets about NHS data sharing on way to every household (6th January 2014)
- The Independent: Your life in their hands: is the care.data NHS database a healthy step or a gross invasion of patient privacy? (6th January 2014)
- The Huddersfield Daily Examiner: Leaflets sent out over NHS plan to share patient data (6th January 2014)
- Health Service Journal: Patients told to opt out or face inclusion in database (6th January 2014)
- Daily Mail: GP rebellion over plan to share millions of patients' data: Fears information could fall into hackers' hands or be sold to drug firms (5th January 2014)
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Daily Mail: Your medical notes aren't private now (10th December 2013)
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- STV News: More than 800 incidents of data loss in NHS health boards (2nd January 2014)
- Evening Telegraph: 800 NHS data breaches in five years (2nd January 2014)
- British Science Association: 'Big data' and biomedicine (December 2013)
- UK Authority.com: Once more unto the digital NHS breach (30th December 2013)
- Pulse: Care homes to update GP records 'daily', says Hunt (13th December 2013)
- USA Today: Tech giants team up in anti-snooping effort (9th December 2013)
- SteadyHealth.com: Britain: DNA Tests For Everyone? (9th December 2013)
- BBC: Google: Online government surveillance could 'hit economy' (9th December 2013)
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The Telegraph: Children could have DNA tested at birth (8th December 2013)
Health Secretary Jeremy Hunt advocates screening every baby's genome at birth
- Ehealth Insider: GP extract to care.data starts in March (2nd December 2013)
- BBC: EU calls on US to rebuild trust over data transfers (27th November 2013)
- The Guardian: The NSA and surveillance ... made simple - video animation (26th November 2013)
- FT: Leaked EU report on US spying: the excerpts (26th November 2013)
- FT: EU accuses US of improperly trawling citizens' online data (25th November 2013)
- Yorkshire Post: Ethical dilemma as scientists reveal genetic codes online (14th November 2013)
- Pulse: NHS England to rebrand 'toxic' Summary Care Records (12th November 2013)
- The Guardian: This EU-US trade deal is no 'assault on democracy' (11th November 2013)
- The Telegraph: Volunteers sought for 'open access' genome project (7th November 2013)
- Reuters: Britons invited to post their genomes online for science (7th November 2013)
- Financial Times: UK volunteers sought to put their genomes under public microscope (7th November 2013)
- This is Jersey: Volunteer hope for genome project (7th November 2013)
- Channel 4 News: Database seeks volunteers to bare all - genetically (7th November 2013)
- The Guardian: Critics urge caution as UK genome project launches (7th November 2013)
- RT: 100,000 British invited to post their genomes online - in the name of science (7th November 2013)
- BBC: Massive DNA volunteer hunt begins (7th November 2013)
- E-Health Insider: More s251 stop-gaps put in place (4th November 2013)
- Health Service Journal: Big data: unthinking, ignorant and callous (17th October 2013)
- E-health Insider: GBP1m national leaflet drop on care.data (16th October 2013)
- Nature: UK push to open up patients' data (15th October 2013)
- Computing: Care.data: the latest threat to patient privacy? (14th October 2013)
- Grimsby Telegraph: The information grab (14th October 2014)
- Fast Company: Inside 23andMe founder Anne Wojcicki's USD99 DNA revolution (14th October 2013)
- The Bristol Post: Fight against transfer of your NHS records (8th October 2013)
- EU Observer: Hundreds of US companies make false data protection claims (8th October 2013)
- Pulse: Eight weeks to inform patients their data is going to be harvested, GPs warned (4th October 2013)
- Pulse: Q&A: NHS England's care.data programme (3rd October 2013)
- Pulse: NHS data extraction programme poses 'enormous threat' to privacy (1st October 2013)
- EHI: NHS England care.data: another view (1st October 2013)
- Wirral Globe: Wirral Euro MP warns of NHS 'data grab' (1st October 2013)
- B2ffxx: Alas medical confidentiality in the UK, we knew it well (27th September 2013)
- HSJ: Exclusive: DWP attempt to obtain drug treatment data rings 'alarm bells' (27th September 2013)
- Daily Mail: GPs threaten to boycott 'Big Brother' NHS database which would force them to send confidential medical records to private firms (21st September 2013)
- Pulse: GP leaders consider boycott of NHS England's data extraction programme (19th September 2013)
- Pulse: GPs to have new 'duty to share' confidential patient data (12th September 2013)
- Daily Mail: 111 staff may get access to your private medical files: Hunt believes it will help staff diagnose patients (11th September 2013)
- Pulse: GPs told to warn patients of imminent extraction of data from GP records (3rd September 2013)
- The Telegraph: Patient confidentiality? Not if the price is right (25th August 2013)
- Lancashire Telegraph: Anger in East Lancashire over plans to sell patient data (23rd August 2013)
- Daily Star: UK medical details to be sold for one pound (19th August 2013)
- The Telegraph: Jeremy Hunt plans sale of confidential patient medical records to private firms (18th August 2013)
- Daily Mail: Your confidential medical records for sale... at just one pound (18th August 2013)
- Pulse: NHS managers rule out publicity campaign for controversial data extract programme (15th August 2013)
- Business Week: Your Medical Records Are for Sale (8th August 2013)
- The Guardian: Patient lost 18,000 pound legal battle over GP medical records (1st August 2013)
- Financial Times: Spying scandals jeopardise the genomic revolution (31st July 2013)
- The News: DNA database hope in search for missing girl (25th July 2013)
- Bloomberg: Patients ID'd From Hospital Records Trigger State Reviews (22nd July 2013)
- EHealthInsider: Health data access for just GBP1 (22nd July 2013)
- Public Service: DNA mapping to help the NHS beat cancer (5th July 2013)
- Times Higher Education: Opinion: 'Big science', big hype, big mistake (27th June 2013)
- Financial Times: Jeremy Hunt reveals push for more IT use in NHS (2nd June 2013)
- 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: GBP140 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)
- Genetics and your Health: The U.K.'s audacious clinical genomics project (2nd 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)
- Daily Mail: Big brother to log your drinking habits and waist size as GPs are forced to hand over confidential records (1st February 2013)
- Genomes Unzipped: GBP100M for whole patient genomes - revolutionising genetic diagnostics or squandering NHS cash? (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)
- 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)
- Daily Mail: NHS faces privacy storm over plan to store thousands of patients' DNA to help develop life-saving treatments (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)
- Computing.co.uk: NHS information strategy gives green light to UK-wide data sharing (21st May 2012)
- eHealth Insider: New NHS information strategy unveiled (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)
- 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)
- UKPA: DNA cancer screening plans unveiled (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 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)
- 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)
- 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)
- External links
- Genetic Alliance UK: GENOME SEQUENCING AND THE NHS The views of rare disease patients and carers (18th July 2019)
- Nuffield Council on Bioethics: Converging on genomics: a few thoughts on the Science and Technology Committee report (20th April 2018)
- Nuffield Council on Bioethics: Whole genome sequencing of babies (March 2018)
- Oliver Butler: The Data Protection Bill and Public Authority Powers to Process Personal Data: Resurrecting Clause 152 of the Coroners and Justice Bill 2009? (28th September 2017)
- Department for Digital, Culture, Media & Sport: General Data Protection Regulation: Call for Views (7th August 2017)
- ICO: Royal Free - Google DeepMind trial failed to comply with data protection law (3rd July 2017)
- National Data Guardian for Health and Care: Review of Data Security, Consent and Opt-Outs (6th July 2016)
- Wellcome: Independent patient data taskforce announced (6th July 2016)
- European Commission: Joint Statement on the final adoption of the new EU rules for personal data protection (14th April 2016)
- European Parliament: Data protection reform - Parliament approves new rules fit for the digital era (14th April 2016)
- Wellcome: Public Confidence in the use of patient data (March 2016)
- EC: European Commission unveils EU-U.S. Privacy Shield (29th February 2016)
- DG Justice: International transfers of personal data to the US for commercial purposes (13th October 2015)
- European Data Protection Supervisor: EU Data Protection Reform
- BOARD PAPER - NHS ENGLAND: Paper : PB.24.09.15/05 (24th September 2015)
- NHS England: Taking a more personalised approach to diagnosis and care – Professor Sue Hill (24th September 2015)
- Data Protection Commissioner of Hessen: The G en eral Data Protection Regulation requires substantial improvement in crucial points! (26th August 2015)
- Major Projects Authority annual report 2015 (25th June 2015)
- Privacy International: Privacy and Data Protection under threat from EU Council agreement (15th June 2015)
- EPP Group: Data protection reform timetable (1st June 2015)
- Joint Letter to EC President Juncker re Data Protection Reform (21st April 2015)
- EDRI: Citizens' groups from around the world call on EC to defend privacy (21st April 2015)
- LobbyPlag: Leaked EU Data Protection documents
- EDRI: Comparison of the Parliament and Council text on the General Data Protection Regulation
- EDRI, PI and others: Data Protection: Broken Badly (3rd March 2015)
- Nuffield Council on Bioethics: The collection, linking and use of data in biomedical research and health care: ethical issues (February 2015)
- The Independent Information Governance Oversight Panel’s report to the care.data Programme Board on the care.data Pathfinder stage (18th December 2014)
- HSCIC: Review of data releases made by the NHS Information Centre (17th June 2014)
- HSCIC Press Release: HSCIC learns lessons of the past with immediate programme for change (17th June 2014)
- Lords debates: Commons Amendments Care Bill [HL] (7th May 2014)
- European Parliament LIBE Committee: NSA snooping: MEPs table proposals to protect EU citizens' privacy (12th February 2014)
- Ethics and Genetics: A Shift in Privacy Law and the Attendant Risks (6th February 2014)
- European Commission: Statement by European Commission Spokeswoman on U.S. President Obama's remarks on the review of U.S. intelligence programmes (17th January 2014)
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NHS England: care.data
Government website promoting sharing of NHS data
- Care.data - Commons Library Standard Note (18th December 2013)
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CEC: On the Functioning of the Safe Harbour from the Perspective of EU Citizens and Companies Established in the EU (November 2013)
European Commission report on the Safe Harbour Agreement between the EU and the US which allows free transfer of personal information from EU Member States to companies in the US which have signed up to the Principles. The report provides evidence that the Safe Harbour scheme (which is based on self-certification and self-enforcement) is inadequate and that many US companies do not comply with the provisions.The European Commission makes 13 recommendations to improve the functioning of the Safe Harbour scheme.
- PHGFoundation: New player enters UK race to sequence 100,000 human genomes (7th November 2013)
- Privacy International: Leaked EU Data Directive amendments show alignment with Regulation, though vote is less certain (21st October 2013)
- Manchester University: Chancellor announces Sino-British health partnership (14th October 2013)
- 2020 health: 2020health calls for care.data to be postponed and replaced by an opt-in system (3rd October 2013)
- MedConfidential: FAQs
- MedConfidential: How to opt out (August 2013)
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EMIS [Egton Medical Information Systems Limited] National User Group: update on Care.data (27th July 2013)
Includes an alternative patient poster and information leaflet or booklet.
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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.