Ban unfair screening
TUC response to the Human Genetics Commission
the TUC’s response to Whose hands on your genes?
summary of recommendations
We oppose susceptibility screening as this will remove the emphasis on an employer’s legal duties to make the workplace safe for all .
We would like to see an amendment to the Disability Discrimination Act 1995 to include asymptomatic employees, or prospective employees, who have tested positive to a genetic mutation. Pre-employment screening may be appropriate in rare occasions and must be based on sound clinical evidence. Employers carrying out such tests should still be subject to the Disability Discrimination Act 1995.
Employers should also be prohibited from using genetic information to affect the terms, conditions, privileges, and benefits of employment.
An individual should never be forced to take a genetic test for employment purposes and an individual’s right to know their genetic constitution, privately, should be upheld.
In rare cases where tests are implemented there must be informed and written consent. People being tested must be counselled by a competent individual and have access to support from a third party such as their union. Occupational health staff should not be classed as competent unless they have undergone specific training in this area. Workers’ representatives must be consulted on the introduction of any such testing.
Medical records of genetic tests must be treated with utmost confidentiality. They should not be the property of the employer and should not be released to any third party without the employee’s consent e.g. insurers. General consent to release medical records should not be held to cover genetic screening which should only be released if specifically agreed.
As this area of science is under constant development we would like to see the situation regarding genetic screening and employment subject to regular review by the Government in consultation with stakeholders including the TUC. Ideally, responsibility for this should rest with the Health and Safety Commission.
Introduction
Whilst the TUC supports the principle of genetic screening for medical reasons, we have grave concerns about its future use or abuse in relation to employment. Following trends in the USA we have seen a gradual increase in the use of drug testing throughout British industry. There is a real danger that a similar pattern will emerge with genetic testing for employment purposes as it becomes cheaper and more readily available, and as multinational companies with UK premises introduce such screening. Strict controls should be put in place before this happens rather than afterwards.
We are aware of two current examples of genetic screening, which are air force pilots tested for possible conditions such as sickle-cell anaemia (which we would oppose for reasons given below), and scene-of-crime officers in the police force, whose genetic fingerprint is held on record to eliminate them from enquiries where their genetic material may have contaminated evidence. We have experienced no problems with this latter example, which is not employment-related in the terms used in this debate.
Our objections to genetic testing for employment purposes are based on three considerations:
- first, many people who test positive for genetic mutations associated with certain conditions will never develop those conditions. Excluding or removing people from the workplace just because they might develop a genetic condition is unacceptable;
- secondly, we believe that genetic screening offers a false option in terms of controlling workplace risks. These risks should be controlled for everyone, rather than selecting a workforce less likely to suffer the results of those risks;
- thirdly, we believe that screening purely on grounds of cost benefit analysis is not acceptable - economic considerations cannot excuse something which is morally wrong.
Screening, or good health and safety management
Genetic screening is used in the USA to identify workers who may be susceptible to toxic substances that are found in their workplace which may cause future disability, or more recently, workers who may be more likely to develop certain injuries such as carpal tunnel syndrome. This is sometimes referred to as 'susceptibility screening', and it is very much driven and tied into the medical insurance system in the USA.
We have concerns that this type of screening will be seen by some employers as a replacement for having good health and safety management standards in the workplace or as a way to limit their liability. First and foremost employers must provide a safe working environment. For example, they have a specific legal duty to eliminate hazardous chemicals in the workplaces and find safer substitutes. This type of genetic screening is about eliminating the worker rather than the hazard which is simply unacceptable.
In the case of drug screening we have already seen employers spending large amounts of money drug screening workers following accidents but failing to look at the other causes of accidents such as work conditions, fatigue due to hours of work and stress, all of which are failures in management standards.
We are also aware that an employer has approached the HSE to ask whether, if there was evidence that some people were genetically predisposed not to suffer the effects of certain hazards, they should be preferred in employment likely to create exposure to that hazard. Again, the TUC would not support that interpretation - we believe that the main priority must be to eliminate, control or reduce risks.
Discrimination
Many people who test positive for genetic mutations associated with certain conditions will never develop those conditions, and yet the point of genetic screening is to exclude them or treat them differently as a result. We therefore believe that an amendment is needed to the Disability Discrimination Act 1995. Whilst discrimination on the basis of an existing disability of genetic origin is prohibited by the 1995 Act, there is no specific legislation to prevent discrimination against asymptomatic employees.
We feel that such an amendment would be in line with Article 21 of the EU Charter of Fundamental Rights, which prohibits discrimination on grounds such as 'genetic features'.
Employers should also be prohibited from using genetic information to affect their employees’ terms, conditions, privileges, and benefits of employment. This is particularly important for occupational pension entitlements: one union reported a major employer in the public sector trying to predict those of its disabled staff who may have a heightened risk of early retirement due to ill health and to exclude them from the early retirement provisions of its occupational pension scheme. The proposal of the Disability Rights Task Force that the 1995 Act be amended in this way is supported by the TUC - we would like to see the change worded in such a way as to include those with genetic predisposition towards impairments as well as those who currently qualify under the 1995 Act.
Pre-employment screening
The one possibly legitimate use for genetic screening in pre-employment situations is where the condition in question is one which may arise quickly and cause serious danger to the safety of the public and co-workers. At present we can only see rare occasions where this may be necessary, in some but certainly not all safety critical jobs, and it must be based on sound clinical evidence.
Nevertheless, even in safety critical jobs, it would be far better to monitor these people for early warning signs of illness which could compromise safety. For example, regular medical screening such as eyesight tests for workers who have tested positive for Huntingdon’s Disease. Currently, at the pre-employment stage, many employers ask whether the prospective employee has a family history of heart disease or diabetes but are unlikely in our experience to refuse this worker, who may or may not develop heart disease, employment on health grounds. In principle we see no difference between family history and testing to see whether a prospective employee may or may not develop a genetic condition. Workers are hired to do a job and should be protected so long as they meet the job’s requirements. They should not be subjected to employers 'guessing' how their health may or may not change in the future.
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