Genetic Discrimination

Over the past decades, there has been a lot in the news about different kinds of discrimination – age, disability, gender, race-based, sex-based, and religious. One kind of discrimination we don’t often hear about is genetic discrimination. It can happen that people who have a genetic condition may worry about getting or keeping a job or getting insurance if the diagnosis becomes known.

Many are concerned that genetic information may be used by insurers to deny, limit or cancel health insurance, and by employers to discriminate in the workplace. They are worried that some insurers may choose not to insure people who are healthy but genetically pre-disposed to future disease onset: such people incur more health-related costs for the insurance company than individuals who are not predisposed. Similarly, they fear that some employers might only employ or retain individuals who are not pre-disposed to future disease onset, since healthy individuals are more productive. Therefore, many lawmakers, scientists and health advocacy groups believe that there is a need for federal legislation to prevent genetic discrimination.

A 2005 study of over 86,000 people involved in getting a particular genetic test found that 40% of them were concerned about genetic discrimination. The participants were from the US and Canada. These people had already agreed to have a genetic test (see Participants Concerned About Genetic Discrimination, ScienceDaily). We believe that the level of concern would be higher in a study that looked at people who were considering genetic testing but had not yet decided to have it.

We will include information from more countries as it becomes available to us. This page currently lists just a few sources on genetic information for Australia, Canada, the European Union, Japan, and the United States .

Australia

Incidences of genetic discrimination have been reported in Australia:

Canada

There have been a few cases of genetic discrimination in Canada:

European Union (EU)

Japan

United States

In the U.S. a landmark law was passed in 2008. GINA, or the Genetic Information Non-discrimination Act, was signed by President Bush on May 21. Although the Act has been passed, it will take a while before U.S. citizens benefit from the legislation. Health related amendments will go into effect May 21,2009. All employment related amendments will go into effect on November 21, 2009. This law is very important in that it takes steps to protect U.S. citizens against genetic discrimination. We do not yet know the details of how this will affect BHD families.

We merely list some websites here; we take no responsibility for the information in the links. It is very possible that there may be other sites that contradict what is posted here, as the list is incomplete.