What is Genetic Discrimination?
Genetic discrimination is using knowledge of a person’s genetic information to make negative decision and judgments. Genetic discrimination is only on the basis of genetic information. Discrimination against a person on the basis of a symptom or handicap caused by a genetic disease is not genetic discrimination.
For individuals with a genetic condition, the main sources of genetic discrimination are insurance companies and employers. These are normally the only two parties, apart from doctors and other healthcare professionals, which may, depending on local laws, have access to an individual’s medical record. There is then a potential to use genetic information to discriminate against an individual, e.g. by selling private insurance coverage at a much higher cost in a country where private insurance is the primary method of healthcare provision.
It is necessary for you to research your local regulations and protections. If you feel you have been discriminated against, it may be best for you to see a professional legal advisor.
Links and Resources
This page currently lists sources on genetic information for Australia, Canada, the European Union and the United States.
Australia
- Genetic Discrimination in Australia
- A 2007 report Investigating Genetic Discrimination in Australia
- Genetic Discrimination Project, which was active from 2002 to 2005.
Canada
- The Canadian Human Rights Act is the principal law protecting against disability discrimination; but it does not refer specifically to genetic discrimination.
- Canadian Coalition for Genetic Fairness works to prevent genetic discrimination.
European Union (EU)
- The EU has set in place a general mandate prohibiting genetic discrimination, as stated in the Preamble to the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes (available below): “The member states of the Council of Europe…reaffirm the fundamental principle of respect for human dignity and the prohibition of all forms of discrimination, in particular those based on genetic characteristics”
- Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes, 2008
- Ethical, Legal & Social Aspects of Genetic Testing – EU, 2004
- EU survey report on Genetic Testing, 2002
- PRIVILEGED project looking at ethics of using genetic data
United States
- The Genetic Information Non-discrimination Act (GINA) is the first federal law against genetic discrimination. GINA protects against genetic discrimination by employers and health insurers.
- It is now illegal for employers with 15 or more employees:
- To use genetic information to make decisions regarding employment.
- To require or request genetic information from a potential or current employee.
- In a few cases, it is legal for an employer to have genetic information of an employee. In those cases, the information is strictly confidential.
- It is now illegal for a health insurer:
- To ask, require or use a genetic test to evaluate you as a client.
- To consider family history and/or genetic test result as a pre-existing condition.
- To deny or raise premiums because of your family history or genetic test.
- It is now illegal for employers with 15 or more employees:
- Genetic Discrimination Resources.
- Genetic Discrimination summary provided by the National Human Genome Research Institute.
