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Is genetic discrimination fear of disability?

2 July 2010
By Catherine Casserley
Cloisters Chambers, London
Appeared in BioNews 565
People with a genetic predisposition to health problems may experience prejudice from employers, prospective employers or insurers due to a perception that they will develop a condition that could seriously affect their work and life. But can present UK legislation protect them against this potentially discriminatory treatment given that it is based on perceived - not actual - disability? In my view: yes.

At first glance, it would seem unlikely that there is any protection in UK law against genetic discrimination. The UK has no specific genetic discrimination legislation and, upon first glance, the Disability Discrimination Act 1995 (DDA) doesn't appear to help.

After all, in the DDA, a person is defined as disabled 'if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities'. Whilst progressive conditions are covered so long as they have some effects, many people with a genetic predisposition to health problems, such as Huntington's chorea, won't fall within the DDA's definition of disability because they will have no symptoms.

However, the EU Employment Framework Directive, adopted in 2000, establishes a framework for combating employment discrimination on the grounds of religion or belief, disability, age or sexual orientation with 'a view to putting into effect in the Member States the principle of equal treatment'. The Directive was based on Race Relations Act 1976 case law, which gave an expansive definition to 'on grounds of', including where a person was treated less favourably because of their association with a person of a particular ethnic origin, or because of the perception, albeit erroneous, that they had such an origin.

If an employer were to treat someone less favourably because of, for example, a genetic predisposition to Huntington's chorea, they would presumably be doing so because of a perception of how that disability could affect the employee's ability to work. Given that the purpose of the Directive was to ensure equality, and to ensure that disability is not treated as a reason for, for example, refusing employment, it can be argued that it prohibits direct discrimination - and harassment - on grounds of genetic predisposition.

The European Court of Justice (ECJ) was asked to rule on this issue, in the case of Coleman. Ms Coleman, who has a disabled child, argued that she had been harassed and treated less favourably than other colleagues who had non-disabled children. She brought a case in the UK employment tribunal under the DDA. She argued that she had been subjected to 'direct discrimination' because of her disabled son. The case was referred to the ECJ. The ECJ held that direct discrimination and harassment were not confined to those who had a disability themselves, but they extended to those treated less favourably/subjected to harassment because of an association with a disabled person (i.e. 'on grounds' of disability).

Although there has not as yet been a case on perception of disability under the DDA, it has been argued at the Employment Appeal Tribunal and judgment is, at the time of writing, awaited (J v DLA Piper).

In any event, the DDA will, in October 2010, be superseded by the Equality Act 2010. This Act contains the anti-discrimination provisions for all grounds, including disability. The DDA and, from October 2010 onwards, the Equality Act could mean that an employer refusing employment because of a genetic predisposition will be acting in breach of the equality legislation. In addition, while the Directive covers only employment and occupation, the Equality Act definition of direct discrimination applies through the Act - thus including insurance providers.

So there is clearly scope for arguing that discrimination on grounds of genetic predisposition is covered in existing legislation, and there are other mechanisms, such as the Concordat and Moratorium relating to insurance, which provide protection against the misuse of such information.

Nevertheless, there are difficulties with this approach. Any interpretation of existing/future legislation would have to be tested in the courts, potentially taking considerable time. In addition, a piecemeal approach could develop with no full consideration of what should be covered by antidiscrimination legislation, and how. Further, there is no guarantee that the Moratorium on insurance will continue beyond 2014.

Specific legislation dealing with the treatment of genetics is the only means, in my view, of providing comprehensive and appropriate provision. There is nothing, at present, to indicate that this will be forthcoming. In the meantime, it is important to use the law to its full extent to provide protection for those people whose genetic disposition leads to discrimination.

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