GeneWatch PR: Keep Genetic Testing Private - Health and Human Rights at Risk - say leading disability, health and human rights groups

Embargoed Until 00.01 Hrs Tuesday 14th February 2006

On Valentine's Day - when things are often strictly personal - forty-five signatories including patient organisations, trade unions, academics and human rights lawyers will deliver a heartfelt message to the Government: People's Genes Are Private. In a Joint Statement of Concern (1), presented today to a House of Commons Cross Party Group, the forty-five organisations and individuals (2) express their fears about the lack of safeguards to prevent discrimination. They call on the Government to legislate against the use of test results in employment and insurance, citing examples of discrimination overseas that have stopped those needing tests from taking them.

"People should be able to make the difficult decision whether or not to take a genetic test on health grounds alone, without worrying about the financial implications," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "Genetic testing should not become a vetting tool for employers and insurance companies and it is time for the Government to act."

In a new report 'Genetic discrimination by insurers and employers: still looming on the horizon',(3) GeneWatch UK has gathered the stories of people living with genetic disorders in the US and Australia. Their personal stories (4) show that discrimination and fear of discrimination blossoms when there is no legal control on the use of test results by employers and insurers. Individuals describe being denied the right to jobs or insurance. One mother of two, whose father died from a genetic disorder in the United States, is scared to test her children because of fears for their future livelihood. Another was denied insurance for her children because they know they carry a gene for a disease, despite the fact that medical opinion says they are not at risk of developing symptoms. Another woman believes she lost family members to breast cancer after they were advised by doctors not to have genetic tests because of the risk of discrimination.

Though widespread use of genetic testing in the workplace has not yet begun in the UK, the signatories of the Joint Statement believe it is poised to take off in Britain. Research from the Institute of Directors shows that employers and insurance companies are keen to make use of tests to check for predisposition to a range of diseases. (5) There is currently no clear legal protection of personal genetic information. Today the forty-four signatories urge ministers to correct that and put legislation in place before the practice spreads in Britain.

Recognising the importance of genetic privacy, one leading employer, IBM, has already rejected use of genetic information in making personnel decisions. (6) Insurance companies, on the other hand, though currently abiding by a voluntary moratorium on the use of test results, continue to seek the right to access genetic test results in future, including the test for a gene linked with increased risk of breast cancer.

Anna Wood, Policy & Campaigns Manager of Breast Cancer Care, said: "Women concerned that they may carry a gene which puts them at high risk of developing breast cancer are likely to be amongst the first to have to weigh the value of having a genetic test against the risk of discrimination.  Deciding whether to have a test is a very complex decision, particularly as those identified as high risk face many further difficult decisions about how to reduce the risk of the cancer developing. It is unacceptable for any woman and their family in this position to have to take on the additional stress of worrying about the impact a genetic test could have on their employment and insurance prospects".

Neil Hunt, chief executive of the Alzheimer's Society, said:

"Unreliable tests claiming to be able to predict a person's risk of developing Alzheimer's disease are already being marketed in the USA. Allowing employers or others to discriminate against people with a known genetic predisposition is not only unfair, but unjustifiable. We campaign for legislation to outlaw discrimination on the grounds of genetic characteristics."

Trade Unions are concerned that the genetic privacy of workers should be respected and that decisions about employment should not be based on misleading genetic testing.

"The use of genetic information in employment is a clear breach of human rights. Genes should not be a factor in who gets a job and who does not: we think such discrimination should be unlawful", said Peter Purton, Disability Officer at the TUC.

The Statement of Concern presented today calls on the Government to prohibit the use of genetic test results to make employment decisions, deny health coverage or raise insurance premiums. It demands that genetic privacy be guaranteed and that people have the right to refuse genetic testing and to refuse to disclose the results of any tests.

For further information contact:

Dr Helen Wallace, GeneWatch UK: 07903 311584

Peter Purton via TUC Press Office: 020 7467 1248

Hannah Clack, Press Officer Alzheimer's Society: 020 7308 0813

Sophie Howells, Communications Manager, Breast Cancer Care: 0207 751 8033

Editors notes:

1. Joint Statement of Concern Regarding Genetic Testing in the Workplace

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 against them in the future.
• 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.

2. Signatories to Joint Statement of Concern: 

   • Organisations:
     • Alzheimer's Society 
     • Breast Cancer Care
     • Breast Cancer UK
     • British Council of Disabled People
     • Corner House
     • Corporate Watch
     • Disability Awareness in Action
     • Disability Rights Commission
     • Fire Brigades Union
     • GeneWatch UK
     • Human Genetics Alert
     • Independent Science Panel
     • Institute of Science in Society (ISIS)
     • Liberty
     • Macmillan Cancer Relief
     • MEDACT
     • National Union of Journalists (NUJ)
     • Privacy International
     • Royal Association for Disability and Rehabilitation (RADAR)
     • Scientists for Global Responsibility
     • Scottish Breast Cancer Campaign
     • Statewatch
     • The Work Foundation
     • TUC
     • UNISON
     • Women's Environmental Network
   • Individuals
     • Althea Brown - Barrister, Doughty Street Chambers
     • Daniel Machover - Hickman & Rose Solicitors
     • Debbie Tripley - Fenners Chambers
     • Dr Alex Scott-Samuel - Senior Clinical Lecturer in Public Health, University of Liverpool
     • Dr. Gilles de Wildt - General Practitioner, Birmingham
     • Dr. Jane Kaye - Research Fellow Oxford Genetics Knowledge Park, University of Oxford
     • Dr. Mairi Levitt - Deputy Director, ESRC Centre for Economic & Social Aspects of Genomics, Lancaster University.
     • Dr. Paul Martin - Deputy Director Institute for the Study of Genetics, Biorisks and Society (IGBiS), University of Nottingham
     • Dr. Tom Shakespeare, Principal Research Associate, PEALS, University of Newcastle.
     • Henrietta Hill - Barrister, Doughty Street Chambers
     • Hugh Montgomery - Reader in Cardiovascular Genetics at UCL and Director Institute for Human Health and Performance.
     • Jill Turner - Queens, Belfast
     • Martyn Day - Leigh, Day and Co Solicitors
     • Paul Bowen - Barrister, Doughty Street Chambers
     • Professor Hilary Rose - Visiting Research Professor of Sociology, City University, London
     • Professor Steven Rose - Professor of Biology, Department of Biological Sciences, Open University
     • Quincy Whittaker - Barrister, Doughty Street Chambers
     • Richard Hermer - Barrister, Doughty Street Chambers
     • Rory O'Neill - Hazards Magazine

3. The report 'Genetic discrimination by insurers and employers: still looming on the horizon' is available at: http://www.genewatch.org/HumanGen/Publications/Reports/GeneticTestingUpdate2006.pdf

4. In October 2004 the US Secretary's Advisory Committee on Genetics, Health and Society heard testimonies from those who had suffered genetic discrimination:

   • "We're given a choice: protect their health or protect their livelihood." Phaedra Malatek fears for the future of her two children.
   • "We put off being tested for 10 years because of what the physicians recommended because of the potential discrimination. Countless women in my family during the last 10 years have been diagnosed with breast cancer, and several of them have lost their battle." Paula Funk, mother with breast cancer.
   • "I am taking steps to keep myself healthy and to prevent cancer in the future, and I am being singled out and made to feel I am a liability." Tonia Phillips. After tests showed she was at high risk of ovarian and breast cancers she had a hysterectomy and a prophylactic mastectomy. She was in the middle of reconstruction when her company asked her to leave their insurance scheme.
   • "I was told by the HR manager not to tell my boss about my hemophilia or I would never be promoted or trained. Consequently, all future bleeding episodes had to be hidden from him." Phil Hardt. His family were denied insurance after he was diagnosed with Huntington's Disease. His testimony outlined the consequences of fear of discrimination: reluctance by those at risk to participate in research; delays in seeking medical and mental health care; Lack of open communication between parents and at-risk children regarding how best to prepare; Misdiagnosis or wrong choice of medication because of lack of honesty with doctors.
   • "I should not have had to spend the better part of six months wondering if the decision to have my children's genetic status verified …was a huge mistake." Heidi Williams. Her children, carriers of a genetic liver disorder, were refused insurance despite the fact that medical research showed that with only one symptomatic parent, not two, they would not suffer symptoms.
5. Testing Times: Directors' Views on Health Testing at Work. Institute of Directors Research Paper: http://www.iod.com/intershoproot/eCS/Store/en/pdfs/regulation_publications_policypapers_healthwork.pdf
6. In pledging not to use genetic data for personnel decisions, Caroline Kovac, General Manager of IBM Health Care and Life Sciences said that genetic testing will be "extraordinarily valuable to medicine. But it can't happen if patients don't have a high degree of confidence in the privacy of that information." IBM's Smart Stance on Genetic Testing, Business Week, October 11 2005