METODOLOGÍA PARA LA DETERMINACIÓN DE LA LÍNEA BASE

Regulations for Health and Safety in the workplace are important to insure that the interests of individual employees are not abused by employers in the drive for profit. However, employees also have obligations: to their employer, by ensuring that they are fit to do the job they are paid to do; and to other employees and members of the public. For example, employers must provide appropriate health and safety, fire and other protective equipment and the necessary training on how to use it. Employees must attend such training and use the equipment provided. Employees should not attend for work under the influence of alcohol or drugs, especially if their ability to use machinery, for example, is impaired such that they and third parties are put at risk as a consequence.

The genetic testing of (potential) employees may be used to: predict the future health of employees; indicate genetic susceptibility to conditions linked to the working environment (e.g. hazardous substances); test for previous exposure to potentially hazardous substances; and test for genetic disorders that could place the employee, fellow employees or the general public in danger. Each of these possibilities has implications for predicted levels of sickness absence, loss of productivity, sickness benefits, pension entitlements, and the costs associated with health insurance and compensation payments. Testing may also lead to genetic discrimination in the workplace. However, genetic testing ignores non-genetic factors related to disease, cannot predict when or how seriously a person may be affected, and obscures the needs of employees without genetic pre-dispositions for a safe working environment. The position of occupational health physicians is also problematic, as the usual obligation of doctor to their patient is potentially biased by other obligations that the doctor has to the organisation that employs them.

5.4.1 Countries with explicit regulation

In countries where genetic testing in employment is explicitly regulated employers may be prohibited from requesting genetic tests or obtaining the results (Austria), or they may only obtain such results if required by law (Denmark), if not prohibited by any other law (Ireland), if it is relevant to assess the employeeÕs ability to perform the work tasks (Denmark, Finland, the Netherlands), in order to protect the health and safety of the individual or third parties (Denmark), or for medical purposes (France, Sweden).

5.4.2 Countries with no explicit regulation

Despite references to the protection of personal data, privacy and health information genetic testing in employment is not explicitly regulated in Belgium, Germany, Greece, Italy, Poland, Portugal, Spain or the UK. However, non-legally binding recommendations, memoranda and codes of practice do advocate the prohibition of genetic testing in employment (Germany), the restriction of genetic testing to issues of public safety or medical purposes (Germany), and prohibition of discrimination on the grounds of genetic test data (Germany, Italy, Spain). In Portugal, testing for pre-dispositions or exposure to hazardous substances could theoretically be justified in the interests of the employeeÕs health and safety as long as such tests do not degenerate into broader genetic testing, genetic discrimination or a means to avoid improving safety conditions for all employees. In Spain, employers should be informed of those genetic test results relevant to an employeeÕs ability to undertake the job or the necessity of improving protective and preventive measures. Finally, in the UK, employers may require employees to undergo genetic testing and may lawfully discriminate against individuals on the basis of their genetic test results. A draft Code of Practice recommends that genetic

testing is only valid where an employee may be at risk in a particular working environment or may pose a serious safety risk to others.

5.4.3 Health and safety and the protection of third parties

Irrespective of whether genetic testing in employment is explicitly regulated, the relevant legislation, guidelines and recommendations in many countries contain a caveat to the effect that genetic testing may occur if in the interests of the health and safety of the individual or third parties. Such exemptions apply in Belgium, Denmark, Finland, Portugal, Spain and the UK, and are recommended in Germany. Finland and the UK make explicit reference to employees engaged in safety critical work, such as transportation, the emergency services, signal workers, where issues of public safety arise. Such employees may theoretically be subject to genetic testing or refused employment if they fail to comply.

5.4.4 Punishments for the (mis)use of genetic test results in employment

Employers may face fines or temporary imprisonment (Finland, France, Sweden) if they do not comply with the regulations or if they (mis)use employeesÕ test results

5.4.5 Prohibition of discrimination in employment on the grounds of disability

Despite the widespread inclusion of disability as a protected ground in anti-discrimination legislation in Europe, it is often unclear whether this extends to discrimination on the grounds of genetic predisposition or susceptibility to disease. Only French legislation makes explicit reference to genetic test results. The inclusion of genetic data is not explicit in anti- discrimination legislation in Germany, Greece, Ireland, or Poland, or within the anti- discrimination clauses of the national Constitutions in Portugal and Spain. The situation is less clear in Italy where the legislation implies protection for people with diseases or disabilities of a genetic origin, but not necessarily for those with genetic predispositions or susceptibilities to disease. In the UK, the Human Genetics Commission recommended that the Government introduce a new piece of legislation dealing specifically with genetic discrimination, but new legislation has not been forthcoming.

5.4.6 The wider European and international position:

The Council of Europe (1992, 1997) has asserted that genetic testing (in employment) should be voluntary and only undertaken for health purposes, scientific research, the direct protection of the person or third parties, or if lawfully required. The Council of Europe (1997) and European Union (2000) also seek to prohibit discrimination on the grounds of genetic

heritage or features. The European Group on Ethics in Science and New Technologies (2003) concurred that any genetic testing in employment must be necessary for the protection of the health and safety of the employee or third parties, and that the principle of non- discrimination be upheld. At the international level, UNESCO (1997), the World Medical Association (1998) and the World Health Organisation (1999) have also recommended restricting genetic discrimination.