As is the case with many diseases, the presence of a genetic condition could make it more difficult to accomplish work related tasks, could require treatments that cause a prolonged absence from work or could cause an employee to become disabled before retirement. An individual’s genetic make-up can increase his susceptibility to developing diseases upon contact with certain substances that are present in the workplace. Finally, like with other medical conditions, genetic conditions can put the security of others in danger (for example, heavy machine operators with epilepsy).

An individual’s state of health can limit his/her work capacity, which can have an impact on absenteeism, insurance costs, occupational risks related to the job, and the risks to public safety. Therefore, an employee’s state of health is important for employers to consider. Genetic information can also provide an employer with information relevant to an individual’s present or future state of health. At the moment of hiring, an employer could use genetic information in the selection of candidates. He/she might want to anticipate possible decreases in productivity or absences during the duration of the employment contract.

• The Declaration of Bilbao (1993) proclaims that informed consent is a prerequisite for interference with privacy, unless such interference is carried out under judicial control and for reasons of public interest.
• UNESCO’s International Declaration on Human Genetic Data (2003) affirms that “the principles of equality, justice, solidarity and responsibility as well as respect for human dignity, human rights and fundamental freedoms, particularly freedom of thought and expression, including freedom of research, and privacy and security of the person, […] must underlie the collection, processing, use and storage of human genetic data.” Moreover, Article 6(a) specifies that it is “imperative that human genetic data […] be collected, processed, used and stored on the basis of transparent and ethically acceptable procedures.”
• In the Policy Statements proposed by the experts of the World Health Organization (WHO) Regional Office for the Western Pacific, Ethical Issues Related to New Developments in the Health Sector (2002), the WHO adopts the following position: genetic mutations that are a risk for the future state of health should not be considered as a means of preventing people who have the position requirements from obtaining a job. Countries should not introduce genetic tests in this sector (health) without having adopted legal limitations with regards to the use of genetic information in matters of employability.
• The Council of Europe’s Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (1997) specifically prohibits all forms of discrimination due to a person’s genetic heritage. As well, Article 12 prohibits predictive genetic tests for genetic diseases, except when done for medical or medical research purposes; therefore, it is prohibited for employers to require genetic testing.

In Canada, there are no existing legal documents specifically prohibiting genetic discrimination. However, genetic information could be contained in the notion of personal information, so it would be protected by legal instruments relating to privacy and discrimination.

• The Canadian Charter of Rights and Freedoms (1982) protects individual privacy against State intrusion, unless access is reasonable and justifiable. The Charter does not apply between individual citizens or non-governmental enterprises; it applies only to state actors.
• The Privacy Act (1983) imposes obligations on ministers and federal organizations to respect individual privacy rights in regulating the collection, use, and communication of personal information.
• The Personal Information Protection and Electronic Documents Act (2000) outlines basic rules relating to the way that private sector organizations can collect, use and communicate personal information in the context of commercial activities.

• The Act Respecting the Protection of personal information in the private sector (1994) and the Act respecting Access to documents held by public bodies and the Protection of personal information (1982) govern the collection, use, and communication of personal information by companies or other organizations.

Genetic information can be used by an employer as an indication of the employee’s state of health at the time of hiring. Later, the employer can use genetic data to foresee potential absences and decreases in productivity due to health problems.

At the time of hiring or throughout the work contract, a screening program allows the identification of employees for whom the work environment poses a greater risk. For example, in the case of a nuclear station, a genetic testing program before hiring could allow the detection of those people who are more susceptible to developing cancer if exposed to radioactivity.

Genetic information could allow employers to target employees who have a predisposition to a condition that may put others in danger. For example, a heavy machine operator having an epileptic seizure could cause harm to others. On a larger scale, genetic information can be used to protect public safety. For example, an airline company might want to establish a screening program so that they can identify pilots or future pilots who could develop Huntington’s disease.

Discrimination might follow the use of genetic information in the hiring process or in the allocation of tasks. This ultimately affects the possibilities of advancement. If an employer offers social benefits, such as a medical plan, he might hesitate to hire employees at risk of developing a debilitating disease. Finally, the risk of disclosure of genetic information to other groups, such insurers, could also be a source of discrimination.

If an employer believes that an employee is unable to hold a job due to a health problem, the law considers that a disability has been attributed to him/her. The employee becomes protected by the Charter, which prohibits discrimination for this reason. The term “disability” could also apply to people who are in good health, but are considered unfit because they are susceptible to developing a disease in the future.

The Quebec Charter of Human Rights and Freedoms prohibits the discrimination of employees due to disability. The Charter would therefore protect employees against discrimination, but not against all uses of genetic tests. In addition, the Charter foresees that distinct practices based on the required competences of a job are not discriminatory. Certain decisions on the part of an employer with regard to the use of genetic information may therefore not be considered discriminatory in the sense of the Charter.

The Office of the Privacy Commissioner of Canada supports a prohibition on the collection of personal genetic information of employees through compulsory screening and surveillance, except if an employee voluntarily offers to undergo the testing and he/she has absolute control over the genetic samples that are obtained.

In Quebec, no law prohibits an employer from requiring that employees undergo genetic testing and genetic screening is not systematically practiced in the workplace. Many considerations come into play with the possibility of imposing such testing. On the employee’s side, the consequences of the disclosure of confidential health information (right to privacy), of the manner in which the biological collection will be carried out (right to integrity), and of the use of results (right to be protected against discrimination) must be taken into account. On the employer’s side, the right to manage the business and the duty to protect the health and security of the employees must be balanced. Finally, public security must also be considered.

Due to the variety of employment situations and genetic diseases, it is difficult to determine if there are situations where an employer would be justified in imposing genetic testing on employees. For example, airline companies could be interested in imposing genetic testing on airplane pilots to predict the development of diseases that typically involve a loss of control or loss of consciousness. Although passenger and public security is in play, other factors must also be considered, such as: the reliability of the genetic test, the existence of other methods of surveillance (i.e. routine exams), the real risk that the pilot could lose control of the airplane, etc.