The term “discrimination” can be interpreted in different ways. The following are examples of various understandings:

• Distinction, exclusion, or preference for a reason that is prohibited by the 1982 Canadian Charter of Rights and Freedoms (such as race, gender etc.);
• Any distinction, exclusion, or preference, regardless of the reason;
• Selecting a person for employment based on presumed genetic risk.

Genetic discrimination, in particular, is discrimination based on an individual’s genetic status.

A number of international documents oppose the discriminatory use of genetic information:

• The Declaration of Bilbao (1993) was the first international document to address the human genome. The declaration denounces all uses of genetic information causing or leading to discrimination in work relations, in the insurance domain or in any other sector.
• UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997) proclaims that “[n]o one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.”
• UNESCO’s International Declaration on Human Genetic Data (2003) specifies that “[e]very effort should be made to ensure that human genetic data and human proteomic data are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual or for purposes that lead to the stigmatization of an individual, a family, a group or communities.”
• The United Nations Economic and Social Council’s Resolution 2004/9 on Genetic Privacy and Non-Discrimination (2004) “[u]rges States to ensure that no one shall be subjected to discrimination based on genetic information” and to take the appropriate measures to attain this goal.

In Canada, there are no existing legal documents specifically prohibiting genetic discrimination.

• Article 15 of the Canadian Charter of Rights and Freedoms (1982) guarantees equality and grants each person the right to not be subjected to discrimination. However, this Charter does not apply to the disputes between individuals. It applies only to state actors.
• The Canadian Human Rights Act (1985) protects individuals against discrimination based on disability (Art. 3) and could therefore protect individuals whose genetic information reveals the risk of disease.
• The Tri-Council Policy Statement (1998, 2000, 2005) recognizes that the risks of discrimination are a part of the risks related to participation in genetic research. Researchers who are carrying out genetic research should reveal possible risks to research ethics boards and participants.

In Quebec, there are no legal documents specifically prohibiting genetic discrimination.

The articles related to discrimination that are found in the Quebec Charter of Human Rights and Freedoms could apply to genetic discrimination; however, this is a question of legal interpretation that remains unanswered.

There is a risk that Canadian and Quebec based insurance companies will classify those seeking life insurance as being at risk or in a bad state of health based on the results of their genetic tests. There have not been any cases of discrimination in this context reported. Nonetheless, concern surrounding the difficulty of obtaining insurance following participation in research that reveals a specific genetic mutation (for example, Huntington’s disease) remains very real.

The Quebec Charter of Human Rights and Freedoms prohibits discrimination against disabled employees. If an employer deems that a person is unable to hold a job due to a health problem, in the eyes of the law, a disability has been attributed to him/her and he/she will be protected by the Charter, which prohibits discrimination based on disability. This includes those whose disability is caused by a genetic condition.

An individual could face discrimination in the hiring process or in the allocation of tasks, which could affect the possibility of advancement. An employee with a genetic disease such as cystic fibrosis who experiences discrimination in the workplace is also protected under the Charter.

The term “disability” could also apply to those who are in good health, but considered unfit for a certain position because of a susceptibility to developing a genetic disease at some time in the future. An employer might hesitate to hire employees who run the risk of developing debilitating disease.

The biological family members of a person who has undergone genetic testing, whether or not such family members participate in the genetic testing, can also be confronted with the risk of discrimination because members of families share genetic information.

Some fear that human population genetics projects that target specific population groups may lead to racism or eugenics (eugenics aimed at improving the human species and its genetic heritage). Population genetic research could lead to the identification of a gene that is responsible for a disease affecting a specific population. The Tri-Council Policy Statement (1998, 2000, 2005) indicates that such results could, in the absence of control or distribution of information, lead to erroneous conclusions and reinforce the discriminatory use of racial, cultural or ethnic labels. Cultural differences and a lack of general knowledge about genetics can contribute to such social issues.

Presently, population biobanks containing genetic information are more often used to study the normal genetic variations in a population than to identify disease genes within a population. Moreover, population genetic projects take into account the risk of discrimination and put various measures in place to attempt to prevent this problem.