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Genetic Information Nondiscrimination Act Protects Your Health and Your Privacy

Posted by Kathy Harrington-Sullivan | Sep 04, 2013 | 0 Comments

If you had the opportunity to predict the future of your health – to know your risk for disease and to take the preventative steps necessary to protect you and your family – nothing should stand in your way, especially your employer.

Advances in science have made identifying one's predisposition to cancer, Alzheimer's, ALS, and other life-threatening diseases more accurate than ever. Yet, fear of retribution from employers and health insurance companies cause many individuals with a family history of disease to avoid testing altogether, putting their health at risk. Their concern: that results of genetic testing would affect their employment status, health care coverage and health care premiums, even if disease symptoms never develop.

In fact, in a 2005 study by Wake Forest University Medical School, 40 percent of 86,000 Americans surveyed believed genetic testing was a bad idea because it would prevent them from getting or keeping insurance.

Your rights when it comes to your DNA

Since 2008, the Genetic Information Nondiscrimination Act (GINA) protects your right to withhold genetic testing information from your employer. As an American worker, you don't have to fear discrimination from an employer because of your predisposition to mental illness or that your group health insurance company will deny you coverage or raise your premiums because of your family history of cancer. Your genetic testing results, whether for diagnostic, therapeutic or counseling purposes, is protected under the law.

According to Executive Order 13145, signed by George W. Bush, GINA protects the following for American workers:

  • Information about your genetic tests
  • Information about the genetic tests of your family members
  • Information about the occurrence of a disease, medical condition or medical disorder among your family members

In addition, under GINA, your employer may not “request, require, collect, or purchase protected genetic information respect to an employee” or share your genetic information with a third party, such as a testing laboratory or insurance company.

In July 2013, Barrett & Farahany, LLP LLP filed a ground-breaking complaint in defense of workers who were forced into DNA testing by their employer. Two employees of an Atlanta-based company were required to provide a saliva sample without being notified in advance of testing, explained their rights under GINA, or offered the opportunity to decline testing without discipline. This mandatory testing was in direct violation of GINA regulations.

There are exceptions to GINA of course, but the decision of whether or not to disclose DNA information is still in your hands, not your employers'. Employers may ask for voluntary disclosure of genetic information for company wellness programs or for genetic monitoring programs if toxic substances exist in the workplace. But again, the choice to proceed with DNA testing is up to you.

Each day, genetic testing helps Americans make better decisions regarding their health. GINA was established to protect your privacy and your health, not your employer's bottom line, so that you can take advantage of the tests available and take the proper precautions today and in the future.

About the Author

Kathy Harrington-Sullivan

Kathy Harrington Sullivan is a Partner at Barrett & Farahany who helps potential clients understand the law, clarify their rights, and determine which steps they can take to protect themselves and their jobs.


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