Coroners and Justice Bill (Clause 152)
In March 2009, the Government announced that it would abandon plans to introduce information-sharing orders, following massive opposition from the public and from professional bodies, and withdrawal of support for the proposal by the Scottish Government.
The Government included proposals to allow ministers to issue 'information-sharing orders' in Clause 152 of the Coroners and Justice Bill in January 2009. These proposals would have allowed medical records, genetic information and DNA collected in the NHS to be shared with any organisation or individual, including private companies, foreign governments and the police, without people's consent or knowledge.
The proposals would have allowed a national DNA database to be built by stealth in the NHS, with access later given to the police.
The British Medical Association (BMA) warned that "This Bill strips patients and doctors of any rights in relation to the control of sensitive health information".
Justice Minister Jack Straw told the Telegraph and the Observer on 8th March that he will launch a fresh public consultation on how to implement more limited proposals. On 10th March, Justice Minister Bridget Prentice confirmed to the parliamentary committee looking at the Bill that the Clause was being withdrawn and stated: "I hope that we shall be able to look at how we can draft a more appropriate clause, not necessarily under the Bill, but at some further stage, so that we can put in place a proper data-sharing provision".
It remains to be seen whether the new proposals will allow misuse of genetic information.
You can read about the implications and history of the original proposals here.
What did the Government propose?
The Government included a section on "information sharing" at the end (Part 8, Clause 152) of the Coroners and Justice Bill
The Lord Chancellor Jack Straw introduced the Bill in a debate in Parliament on 26th January. He argued that information-sharing "can help to improve opportunities for the most disadvantaged, provide better public services, reduce the burden on businesses, implement policies more effectively and detect fraud". He gave the example of a bereaved family which has to contact many different government departments at a stressful time.
However, the proposed powers in the bill were very broad, and allowed any information to be shared without consent. Ministers could issue 'information-sharing orders' for any purpose with which their department is concerned. These orders would have allowed any information - including DNA and genetic information - to be disclosed, consulted or used for a purpose other than that for which it was originally collected.
Once issued, an order may remove or modify any existing legal barrier to information sharing (for example, the common law of confidentiality). An order can give ministers the power to allow onward disclosure of the information to third parties, including foreign governments or commercial companies.
The proposals also allowed the government to make it a criminal offence to refuse to share the information required by an order. This could mean that people working in the NHS are forced to pass on confidential information, even when they think that this is wrong.
What were the concerns?
GeneWatch was particularly concerned about what the proposals would have meant for DNA and genetic information.
Blood samples are often collected in the NHS to do medical tests, including from every baby at birth. The information-sharing powers meant that these samples could be analysed by private companies to obtain genetic information without people's knowledge or consent. This information could then be shared with others, also without people's knowledge or consent. A national DNA database could be built by stealth in the NHS, with access later given to the police.
Although the implications for privacy are very serious, this is not the only problem. Widespread genetic screening could also be very bad for health, because genes are poor predictors of most diseases in most people. Many private companies want to make genetic health predictions because they think you can then be persuaded to buy medicines and other products, even if you are not ill. A list of the problems with this idea is here.
A lot more information about genes and health, genes and marketing, and genetic discrimination is available in the Human Genetics section of this website: you can use the navigation bar on the left to find this information.
Because information-sharing orders would have allowed ministers to decide to share any private information that they hold about you without your knowledge or consent, other organisations raised different concerns, which you can read about by following the links below.
Liberty strongly opposed the data-sharing clauses in the Bill and said that they make a mockery of the Data Protection Act. Privacy International issued a 'Black Zone' report on the Bill: something it does only when a country proposes legislation that it regards as posing an exceptional danger to privacy.
Why were the information-sharing proposals made?
The GeneWatch documents below include a report on the history of the proposals in the Bill. This report shows how and why the pharmaceutical industry and private healthcare companies have lobbied to gain access to your electronic medical records and your DNA. The documents show how the Government has long supported this idea and has teamed up with private companies to try to implement genetic 'prediction and prevention' of diseases in the NHS, combined with continuous healthcare monitoring. A ministerial-level strategy group has been set up to implement this industry plan, co-chaired by GE Healthcare (a subsidiary of the US company General Electric).
The Government believes that transforming the NHS in this way will allow Britain to win the race to commercialise the human genome and build a new 'knowledge-based economy'. Many doctors and scientists are sceptical that genetic screening will be useful for your health. However, the private healthcare industry and some pharmaceutical companies believe it will allow them to massively expand the market for drugs and other healthcare products and services to healthy people, who will be told that they are at high genetic risk of various diseases.
The proposals in the Bill come from the Data-Sharing Review, undertaken by Professor Sir Mark Walport, Director of the Wellcome Trust, and the Information Commissioner Richard Thomas. Sir Mark (who was knighted in the 2009 New Year's Honours list) has long been an advocate of the idea that commercial companies should be given access to genetic information linked to electronic medical records in the NHS, in order to implement a 'genetic revolution' in healthcare. You can read more about this in the GeneWatch report below.
In addition, the recent judgment by the European Court of Human Rights in the Marper case means that the Government will not be able to keep innocent people's DNA on the police National DNA Database. Instead, they could argue that they are storing DNA in the NHS for health or research purposes. The police can already gain access to medical records, including DNA, if they are granted an order by a court. However, the proposals in the Bill would have allowed the police to be given routine access to DNA stored in the NHS, or to the genetic profiles that the Government plans to store in electronic medical records in the future.
What happens next?
Following the withdrawal of the original proposals on 7th March, there will be a public consultation on more limited proposals. It remains to be seen whether these proposals will provide adequate protection for genetic information.
- House of Commons debate: Coroners and Justice Bill (24th March 2009)
- Joint Committee on Human Rights: Legislative Scrutiny Coroners and Justice Bill (20th March 2009)
- Coroners and Justice Bill: Committee stage report (19th March 2009)
- Coroners and Justice Bill Committee
- Second reading of the Coroners and Justice Bill (26th January 2009)
- GeneWatch reports and briefings
- GeneWatch response to Academy of Medical Sciences review of research regulation 9th September 2010
- History of the proposal for data-sharing without consent 26th January 2009
- Summary & Conclusions: History of proposal for data-sharing without consent 26th January 2009
- MPs Briefing: The Coroners and Justice Bill: A DNA database by stealth? 26th January 2009
- Useful links
- Privacy International: UK Government backs down on data-sharing after PI campaign (8th March 2009)
- Unlock Democracy: Stop 152
- Letter from medical organisations to Jack Straw
- Privacy International: Civil Society joins key professional bodies to demand removal of data-sharing powers
- Bar Council condemns data-sharing threat in Coroners Bill
- British Computer Society briefing on data-sharing
- Liberty's second reading briefing on the Coroners and Justice bill
- Privacy International's 'Black Zone' report on UK data-sharing
- NO2ID on data-sharing
- The British Medical Association's second reading briefing on the Coroners and Justice Bill
- NO2ID briefing on the Coroners and Justice Bill
- NO2ID: A bill to build the database state
- Official documents
- Press articles
- The Telegraph: Genetic 'magic bullet' cures have proven a 'false dawn' (21st April 2009)
- Mail: Patients to be banned from deleting their records from NHS database (5th April 2009)
- The Telegraph: Let people control their own data (23rd March 2009)
- Politics.co.uk: Coroners Bill analysis: Privacy (23rd March 2009)
- Out-Law: Data-sharing U-turn is response to public outcry, says Government (9th March 2009)
- The Observer: Straw bows to pressure over data-sharing (8th March)
- The Mail on Sunday: Backlash forces Labour U-turn over sharing private data (8th March 2009)
- The Telegraph: Government abandons data-sharing scheme (8th March)
- The Times: Unions demand laws against 'blacklisting' after workers' data sold (6th March 2009)
- The Economist: Sorry that's personal (5th March 2009)
- ComputerWorld: Government's data-sharing plans are torn apart by professional bodies (4th March 2009)
- The Telegraph: Passing medical records to Government and companies will 'damage patient care' (2nd March 2009)
- The Guardian: Straw: Concerns are justifiable (27th February 2009)
- The Independent: Straw forced into retreat over 'Big Brother' data sharing plan (24th February 2009)
- The Telegraph: 'Big Brother' data sharing bill to be watered down as Straw retreats (24th February 2009)
- Computer Weekly: Coroners and Justice: Government "retreat" is an ambush (24th February 2009)
- Metro: Straw is told to ditch the snoop law on personal data (22nd February 2009)
- The Times: Genetic Database? [Letter from Health Minister] (19th February 2009)
- The Guardian: Data bill jeopardises confidentiality, say doctors' leaders (14th February 2009)
- The Times: Should we sequence everyone's genome? (13th February 2009)
- The Times: Genetic mapping of babies by 2019 will transform preventive medicine (9th February 2009)
- E-health Insider: BMA calls for exemption on data-sharing (2nd February 2009)
- Mail on Sunday: We'll store DNA samples on new computer, admits DoH (1st February 2009)
- Computing.co.uk: MPs unite in attempt to kill data-sharing bill (28th January 2009)
- The Independent: Data Bill 'will wipe out privacy at a stroke' (27th January 2009)
- The Telegraph: Threat to privacy under data law, campaigners warn (26th January 2009)
- The Register: Chaotic Coroners and Justice Bill reels into view (22nd January)
- Press releases
- GeneWatch PR: Genomes for all: bad for health and the end of privacy 4th January 2010
- GeneWatch PR: Lords Committee likely to fail public on gene test regulation 6th July 2009
- GeneWatch PR: Biotech budget would devastate NHS (20th April 2009) 20th April 2009
- GeneWatch PR: Data-sharing Bill will build national DNA database in NHS 26th January 2009