Passage of the Genetic Information Nondiscrimination Act

After a year of political wrangling, despite widespread political support, the president has signed the Genetic Information Nondiscrimination Act (GINA).

Health insurance provisions will go into effect in a year, and employment provisions in 18 months.

Basically, this means that health insurances will be forbidden by federal law from using genetic information (such as genetic testing results for conditions like breast cancer genes or cystic fibrosis) for determining whether you can be insured or for setting premium rates. Employers will be forbidden from using this information for decisions such as hiring, firing, job assignments or promotions.

This is important since over 1,200 genetic tests are presently available to help diagnose or determine possible risk for a wide range of medical conditions. Many patients are interested in getting the tests performed, but also concerned about how the results could potentially be used against them (for example, being dropped by health or life insurances or being fired from their jobs).

Also, many medical studies rely on volunteer participants to be willing to undergo genetic testing and waivers have had to include the possibility of prejudicial use of the test results by third parties. This has certainly made research into genetic diseases more difficult than it already is.