As stated in the Genetic Information Non-discrimination Act (GINA) of 2008, Genetic discrimination is when a person is treated unfairly because they have a genetic mutation that increases their chances of developing a disease. This includes employers firing an employee or health insurance companies raising premiums or refusing to provide coverage because the person has a mutation.
Fear of genetic discrimination may stop you from getting genetic testing for BHD, which makes managing your health and that of your family more difficult. However, many countries have legislation to protect people from genetic discrimination, some of which are listed below. If you have BHD, it might be wise to familiarise yourself with the genetic discrimination legislation in your home country. If you feel you have been discriminated against, you should seek legal advice.
Links and Resources
This page currently lists sources on genetic information for Australia, Canada, the European Union, the United Kingdom and the United States.
Genetic discrimination is included in Commonwealth, state and territory discrimination laws, and covers employment, life insurance, education and access to services.
The Canadian Human Rights Act is the principal law protecting against disability discrimination, but does not refer specifically to genetic discrimination. However, The Genetic Non-discrimination Act is currently being considered by the Canadian Senate and the Canadian Coalition for Genetic Fairness works to prevent genetic discrimination.
European Union (EU)
In 2008, the EU published a general mandate prohibiting genetic discrimination in member states, the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes. In the mandate it states that “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.”
- Ethical, Legal & Social Aspects of Genetic Testing – EU, 2004
- EU survey report on Genetic Testing, 2002
There is currently no UK-specific anti-genetic discrimination legislation. However, there is an agreement between the Department of Health and the Association of British Insurers called the Concordat and Moratorium on Genetics and Insurance, which prevents insurers from asking customers certain questions about their genetic information.
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.
Under the terms of GINA, it is illegal for an employer to use your family medical history or genetic test results to make decisions about your employment; or for a health insurance provider to use this information to calculate your health insurance premium, or to deny you health insurance.
Publication date: December 2014
Review date: December 2017