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Why the UK needs a law to prevent genetic discrimination

29 March 2006
By Anne Begg MP
Labour MP for Aberdeen South
Appeared in BioNews 352
Genetic testing potentially holds the key to providing many treatments, and possibly even cures, for a whole range of diseases. The knowledge that someone has a genetic condition or propensity may determine lifestyle choices, or help in early detection so that remedial treatment can prevent the symptoms from occurring. As genetic testing becomes more sophisticated it is likely to become more important in diagnoses and treatment and is something, I believe, which must be allowed to develop.

However, if people fear that the information gained from such tests might be used to discriminate against them in the future, whether it be when applying for insurance or in their employment, they may not undergo such tests. That is why I sought a debate in Parliament recently on the issue of genetic discrimination. I wanted to make sure that this subject was on the government's agenda.

While the Labour government has done sterling work since 1997 in outlawing discrimination against disabled people, there is still no legislation protecting those who face discrimination because of their genetic make up. If someone has symptoms and a disability as a result of a genetic condition they will most likely be covered by existing disability discrimination legislation. However, someone who is asymptomatic is not covered, nor is someone who might be affected by a condition later in life, nor, indeed, is someone who has undergone a predictive genetic test.

Predictive genetic tests are still crude, and their development has a long way to go, but they are already being used to predict cancer or heart disease. Although such tests may predict a propensity or susceptibility, they can't predict that the person will definitely develop the condition, or any time scales if they should. Therefore, if predictive genetic tests were used by insurance companies or employers to determine an individual should be treated less favourably than someone else, this would be discrimination, and such practice should be outlawed.

At a time when the Government is trying to encourage more disabled people into the work force, and trying to keep in work those who have developed a disability or ill health while in a job, it would be perverse if employers were able to use genetic tests as a recruitment tool to screen out people who were thought to be a greater risk. In response to my debate, Meg Munn, the Minister for Equalities, confirmed that the government is undertaking a discrimination law review and is working to develop a clearer and more streamlined framework of equality law. This review will lead to a single equality Act later in this Parliament. As part of the review the government is considering extending discrimination law into new areas, including genetic predisposition. A Green Paper is due to be published this summer, which will set out initial proposals and options for clarifying and streamlining discrimination law. This is an ideal chance for people to contribute their views if they want to see something more on the statute books than the present moratorium whereby insurance companies have agreed not to use genetic tests.

I hope it won't be long before gene replacement therapy is possible and is providing a cure for many single gene defect conditions such as cystic fibrosis. I envisage a world where it will be possible to identify a defective gene and fix it, not just used as a diagnostic tool to determine whether a fetus should be aborted, as sometimes happens at present.

But for genetic research to realise its full potential, people have to be willing to undergo genetic testing. They will only do this if they can be sure that the information revealed by such tests can never be used to discriminate against them. If the fear of discrimination exists, then some people will refuse to be tested and as a result could not receive the treatment or help which could improve their lives. It is about public confidence - the confidence to undergo a test which will be of benefit to their long term health and not, sometime later, be used against them.

14 September 2009 - by Rosie Beauchamp 
A study published in the Medical Journal of Australia indicates that up to 50 per cent of Australians could be refusing genetic tests due to the fear that the test outcomes will result in increased health insurance premiums or refusal to insure them altogether. In Australia, genetic information does not inform health insurance. However, it may affect insurance policies that cover trauma, disability, sickness and accidents. Applicants for such health insurance policies have a statutory duty to...
27 February 2006 - by Dr Alison Stewart 
The last two weeks have seen yet another outcry on the topic of 'genetic discrimination' in insurance. The main thrust of the argument is that because we cannot do anything about our genes it should be illegal to treat us differently on the basis of our genetic risk of death...
20 February 2006 - by Dr Helen Wallace 
Last week, in a Joint Statement of Concern, forty-five organisations and individuals expressed their fears about the lack of safeguards to prevent genetic discrimination. The Statement calls on the Government to legislate against the use of genetic test results in employment and insurance. Many European countries have such laws, however...
16 February 2006 - by BioNews 
Nobel prize winner Sir John Sulston has repeated his call for new UK laws to prevent genetic discrimination. He says that when the current moratorium on the use of genetic tests results by insurers runs out, in November 2011, it should be replaced by legislation. Professor Sulston, who is vice-chair...
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