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Genetics, Privacy and Your Legal Rights

Research into the human genome has led to lifesaving therapies, better disease detection, and the promise of personalized medicine. But when medical genetics began to illuminate the relationship between genes and health, it also raised privacy and discrimination issues that the existing laws were ill-equipped to deal with.

If a test reveals that you carry a gene mutation associated with a disease, could that information affect your job prospects? Could your health insurer raise your premiums? Will your children's coverage be affected?

Fortunately, the answer is no. After years of debate, Congress has passed legislation making it illegal for health insurers and employers to use your private genetic information against you.

What is the Genetic Information Nondiscrimination Act?

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a new federal law that protects Americans from being treated unfairly because of their genes.

  • As of May 2009, health insurers may not deny or limit coverage or charge higher premiums based on a person's genetic information.
  • As of November 2009, employers may not use genetic information to make decisions about hiring, firing, promotion, or job placement.

"Genetic information" refers to:

  • Results of any genetic tests you or your family members have taken
  • Participation in genetic research studies
  • Family history of hereditary disease
  • Participation in genetic counseling or education

GINA also bars insurers, employers, and labor organizations from:

  • Seeking genetic information
  • Requiring a person to take genetic tests
  • Disclosing genetic information

These federal protections apply equally to fetuses, so parents do not need to worry that their child will be denied coverage based on the results of a prenatal test.

Why was GINA necessary?

Before GINA, a patchwork of state laws protected some citizens but left others vulnerable to unfair treatment based on their genetic makeup.

As a result, legitimate privacy concerns and fear of discrimination deterred many Americans from taking medically valuable tests or participating in research studies. These fears slowed the pace of medical research and effectively limited people's access to information about their own health.

The new federal law addresses these concerns by providing remedies for anyone facing genetic discrimination and imposing significant penalties on insurers and employers who attempt to misuse genetic information.

What are the GINA's Limitations?

Gina provides solid, far-reaching protections, but it does have certain limitations. The law does not:

  • Apply to the military
  • Cover life insurance, disability insurance, long-term care insurance, or mortgage insurance
  • Require healthcare providers and insurers to keep your genetic information more confidential than your other medical records.

How does the federal law affect state laws?

Laws against genetic discrimination vary widely from state to state. The federal law sets a minimum standard of protection that must be met in all states. States are free to enact additional protections (and many do), but they cannot take away the rights guaranteed by GINA.

Full text of H.R. 493: Genetic Information Nondiscrimination Act