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You are in Human Genetics → Privacy and Discrimination

Privacy and Discrimination

DNA can be used to identify individuals in a similar way to a fingerprint. This means it can be used to track individuals, using databases which link a person's DNA to their name and address or other personal information. DNA can also reveal who a person is related to and some information about their risk of future illness. This can include very personal information such as non-paternity and whether a person might be at risk of passing a genetic disorder onto their children. Testing and storing DNA therefore raises important issues about privacy and rights.

In Britain, the police National DNA Database is the second largest in the world (after the US) and includes many people who have never been convicted of any offence. Police DNA databases are also being set up or expanded in in other countries.

There have been several attempts to build a genetic database by the backdoor in the National Health Service (NHS), by allowing storage and testing of DNA without consent, so that genetic sequences can be stored in electronic medical records. You can read about these plans (including proposals to sequence the DNA of every baby at birth) in the Genes and the NHS section of this website.

People with adverse genetic test results may be discriminated against in the future by insurers or employers. The Equalities Act will prevent employers asking for genetic test results, but insurers are prevented from using most genetic test results only by a voluntary agreement.

Resources

• Press articles
  • AFP: Canada's high court upholds law targeting genetic discrimination (10th July 2020)

  • Nature: Want to do better science? Admit you’re not objective (9th March 2020)

  • Slate: You Can't Hide Your Genes (4th May 2018)

  • New York Times: The Golden State Killer Is Tracked Through a Thicket of DNA, and Experts Shudder (27th April 2018)

  • The Conversation: It's time to talk about who can access your digital genomic data (3rd December 2017)

• Press Releases
  • GeneWatch PR: Innocent urged to reclaim their DNA (27th April 2009) 26th April 2009
  • GeneWatch PR: GeneWatch response to the Nuffield report on forensic use of DNA 17th September 2007
  • GeneWatch PR: GeneWatch response to calls to expand the National DNA Database 4th September 2007
  • GeneWatch PR: GeneWatch welcomes citizens' inquiry into police use of DNA 1st August 2007
  • GeneWatch & ARCH PR: Over 100,000 innocent young people now on the National DNA Database 21st May 2007
  • GeneWatch PR: Police DNA database out of control, concludes new GeneWatch investigation 15th July 2006
  • GeneWatch PR: GeneWatch UK response to Scottish Parliament's vote on police retention of DNA. 24th May 2006
  • GeneWatch PR: GeneWatch response to new proposals for police retention of DNA in Scotland. 21st May 2006
  • GeneWatch PR: Misleading benefits claimed for police retention of innocent people's DNA, says new GeneWatch report 27th February 2006
  • GeneWatch PR: Keep Genetic Testing Private - Health and Human Rights at Risk - say leading disability, health and human rights groups 14th February 2006
  • GeneWatch PR: GeneWatch UK response to the Science and Technology Committee report 'Forensic Science on Trial' 28th March 2005
  • GeneWatch PR: Gene test insurance deal inadequate: GeneWatch UK comment on announcement of deal between the Government and insurance industry 14th March 2005
  • GeneWatch PR: Police DNA database needs stronger safeguards for privacy and human rights 12th January 2005
  • GeneWatch PR: Legal loophole allows genetic discrimination in the workplace. 24th September 2003
  • GeneWatch PR: GeneWatch UK response to Government White Paper on Genetics: Safeguards against genetic discrimination insufficient 23rd June 2003
  • GeneWatch PR: GeneWatch response to Human Genetics Commission report on personal genetic information 20th May 2002
  • GeneWatch PR: GeneWatch UK Response to Insurance Industry Announcement on Genetic Tests 22nd October 2001
• Reports
  • The DNA Expansion Programme: reporting real achievement? 27th February 2006
  • Genetic discrimination by insurers and employers: still looming on the horizon. 14th February 2006
  • The Police National DNA Database: Balancing Crime Detection, Human Rights and Privacy. 1st January 2005
  • Genetic Testing in the Workplace 31st May 2003
• Briefings
  • Briefing note for MPs, MSPs, AMs & MLAs. DNA: proposed expansions of powers 25th March 2007
  • Briefing for Councillors and Police Authorities: Police retention of DNA 23rd February 2007
  • MSPs' Briefing - Police Retention of DNA 9th February 2006
  • Briefing 31: THE POLICE NATIONAL DNA DATABASE: Human rights and privacy 31st May 2005
  • MPs' Briefing: Human Genetics No. 5 - The Police DNA database: balancing crime detection and human rights 1st January 2005
  • Briefing 24: Genetic Testing in the Workplace: Creating a genetic underclass? 1st November 2003
  • MPs' Briefing: Human Genetics No. 1 - Genetic Testing in Insurance: A New Form of Discrimination 30th September 2001
  • Briefing 15: Genetic Testing in Insurance and Employment: A new Form of Discrimination 31st May 2001
• Consultation responses
  • GeneWatch UK Submission to the Discrimination Law Review 6th August 2007
  • GeneWatch UK submission to the Nuffield Council on Bioethics' consultation on forensic use of bioinformation 9th January 2007
  • Submission to Home Office consultation on standard setting and quality regulation in forensic science 18th October 2006
  • Police retention of prints and samples: proposals for legislation. 19th July 2005

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Resources

• Press articles
• Press Releases
• Reports
• Briefings
• Consultation responses

Topics

• Genetic Testing in Insurance and Employment

  Use of genetic test results by employers will be restricted by the Equality Act 2010, which restricts what employers can ask about in pre-employment medical checks.

• The UK Police National DNA Database

  Read the GeneWatch UK briefing on the automated sharing of DNA profiles across the EU. The UK parliament has agreed to opt in to automated sharing but concerns about potential miscarriages of justice have not all been resolved.

• International DNA databases

  Vist GeneWatch's new website, My DNA, My Family, My Rights.

  Corporations selling DNA-profiling technology are aiding human-rights abuses: read the article in Nature.

  Read the report by the Forensic Genetics Policy Initiative: Establishing Best Practice for DNA databases. This report was developed using an innovative consultative approach. The final report reflects input from civil society groups around the world from a human rights perspective.