Legislative overview GINA
Privacy and Discrimination in Genetics
Genetic Information Nondiscrimination Act of 2008
What's genetic discrimination?
Genetic discrimination occurs if people are treated unfairly because of differences in their DNA that increase their chances of getting a certain disease. For example, a health insurer might refuse to give coverage to a woman who has a DNA difference that raises her odds of getting breast cancer. Employers also could use DNA information to decide whether to hire or fire workers.
Who needs protection from genetic discrimination?
Everyone should care about the potential for genetic discrimination. Every person has dozens of DNA differences that could increase or decrease his or her chance of getting a disease such as diabetes, heart disease, cancer or Alzheimer's disease. It's important to remember that these DNA differences don't always mean someone will develop a disease, just that the risk to get the disease may be greater.
More and more tests are being developed to find DNA differences that affect our health. Called genetic tests, these tests will become a routine part of health care in the future. Health care providers will use information about each person's DNA to develop more individualized ways of detecting, treating and preventing disease. But unless this DNA information is protected, it could be used to discriminate against people.
What's the Genetic Information Nondiscrimination Act (GINA)?
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.
Why was the law needed?
The law was needed to help ease concerns about discrimination that might keep some people from getting genetic tests that could benefit their health. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace.
What's included in the law?
The law protects people from discrimination by health insurers and employers on the basis of DNA information.
What's not included?
The law does not cover life insurance, disability insurance and long-term care insurance.
How does the federal law affect state laws?
Before the federal law was passed, many states had passed laws against genetic discrimination. The degree of protection from these laws varies widely among the different states. The federal law sets a minimum standard of protection that must be met in all states. It does not weaken the protections provided by any state law.
Where can I find more information?
- For the text of the bill see: H.R. 493 [thomas.loc.gov]
- Information on Genetic Discrimination
- Frequently Asked Questions About Genetic Testing
Last Updated: Januuary 27, 2014