Joint Statement of Concern

On 14th February 2006, in a Joint Statement of Concern, presented to a House of Commons Cross Party Group, forty-six organisations and individuals called on the Government to legislate against the use of test results in employment and insurance. The full statement, with some additional signatures, is below.

Statement Full Text

Recognising the potential benefits of genetics and genetic technologies in medicine; wanting people to be confident when having genetic tests on medical grounds that this information will not be used to discriminate against them; and wishing to ensure that genetic technologies are developed and used in an ethical and safe manner and do not compromise human rights.

We, the organizations and individuals undersigned:

  • Note a growing interest among employers in the use of genetic testing in the workplace, and rapid development and promotion of testing technology.
  • Are concerned that there is currently no clear legal framework to prevent the use of genetic testing by employers or insurers to make decisions about who gets insurance or a job.
  • Recognise that testing is not a reliable or conclusive predictor of a person's future health or ability to do their job, and that it is unlikely to be scientifically robust in the foreseeable future.
  • Consider that a moratorium preventing insurers from using the results of genetic tests is not sufficient protection to ensure that people who may wish to take genetic tests for health purposes will not find these used to discriminate
  • Are concerned that the use of genetic testing in the workplace and in the provision of insurance couldreduce effective action to remove potential hazards from the workplace. Instead employers may be encouraged to exclude and/or discriminate against vulnerable workers and job applicants on the grounds that they:
    • are genetically susceptible to workplace hazards
    • are genetically susceptible to a future illness that may have a high impact on pension or early retirement costs
    • have a genetic disorder which may affect their health in future
  • Believe that any requirement or request of employees, or those seeking insurance, to undergo genetic testing, or to disclose information derived from such tests constitutes an infringement of privacy and individual human rights, which will require the strongest justification.

We therefore call on the Government to introduce legislation to:

  • prevent discrimination by employers and insurers on the basis of genetic test information;
  • prohibit employers and insurance companies from using genetic test results to make employment decisions, deny health coverage or raise insurance premiums;
  • guarantee genetic privacy and the right of people to refuse to undergo genetic testing;
  • ban insurers from requiring genetic tests, from requiring the disclosure of genetic test results, and from using the results of tests to increase insurance premiums or deny coverage.


1. GeneWatch UK
2. Liberty
3. TUC
5. National Union of Journalists (NUJ)
6. Disability Rights Commission
7. British Council of Disabled People
8. Disability Awareness in Action
9. Alzheimer's Society
10. Human Genetics Alert
11. Statewatch
12. Corner House
13. Scientists for Global Responsibility (SGR)
14. Breast Cancer Care
16. Privacy International
18. The Work Foundation
19. Fire Brigades Union
20. Women's Environment Network
21. Breast Cancer UK
22. Institute of Science in Society
23. Independent Science Panel
24. Macmillan Cancer Relief
25. Corporate Watch
26. Fire Brigades Union
27. Scottish Breast Cancer Campaign
28. Dr. Jane Kaye - Research Fellow Oxford Genetics Knowledge Park, University of Oxford
29. Hugh Montgomery - Reader in Cardiovascular Genetics at UCL, and Director of the Institute for Human Health and Performance.
30. Dr. Paul Martin - Deputy Director Institute for the Study of Genetics, Biorisks and Society (IGBiS), University of Nottingham
31. Jill Turner
32. Dr. Mairi Levitt - Deputy Director, ESRC Centre for Economic & Social Aspects of Genomics (CESAGen), Lancaster University.
33. Dr Alex Scott-Samuel, Senior Clinical Lecturer in Public Health, University of Liverpool
34. Dr. Tom Shakespeare - Principal Research Associate, PEALS, University of Newcastle.
35. Martyn Day - Leigh, Day & Co.
36. Paul Bowen - Barrister, Doughty Street Chambers
37. Althea Brown - Barrister, Doughty Street Chambers
38. Richard Hermer - Barrister, Doughty Street Chambers 
39. Quincy Whittaker - Barrister,Doughty Street Chambers
40. Henrietta Hill - Barrister, Doughty Street Chambers
41. Daniel Machover - Hickman & Rose Solicitors
42. Debbie Tripley - Fenners Chambers
43. Professor Hilary Rose - Visiting Research Professor of Sociology, City University, London
44. Professor Steven Rose - Professor of Biology, Department of Biological Sciences, Open University
45. Dr Gilles de Wildt - General Practitioner, Birmingham 
46. Rory O'Neill, Hazards Magazine
47. Orla Flood
48. Christopher Buckley
49. Margaret Rowe

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