HR 1313, now rapidly making its way through the U.S. Congress, would eviscerate the Genetic Information Nondiscrimination Act. It would exempt employer “workplace wellness” programs from GINA and the Americans with Disabilities Act.
OUR friend Julie died of ovarian cancer several years ago. In her wake she left family and friends heartbroken, but also angry, because her death was completely unnecessary.
While Julie beat breast cancer in her thirties, she decided to forgo genetic testing despite a familial history of breast and ovarian cancer. While genetic testing was fairly new, it was her fear of losing her job or insurance that drove her decision. With a special-needs child at home, the risk of losing insurance was worse than the risk of a second cancer.
In the 1990s, as discoveries between genetic markers and diseases became clear, insurance companies and employers could use an individual’s genetic information to deny employment and coverage over concern that he or she would become sick.
However, a genetic mutation is only one indicator of future illness. Many will get cancer or other diseases with no known inherited genetic connection.
Julie’s fears proved deadly. In 2003, Julie was diagnosed with ovarian cancer … and a mutation in the breast cancer gene BRCA1. Had she known earlier, surgical interventions to prevent cancer would likely have been successful and Julie might very well still be with us.
In great part to preclude stories like Julie’s from being repeated, Congress passed the Genetic Information Nondiscrimination Act (GINA) in 2008. GINA ensures that people can learn genetic information essential to their health without fear of repercussions in employment or loss of insurance coverage.
And with GINA enacted, it was safe for women to gain this genetic information that helped save lives.
We write together today because the security provided by GINA is in danger.
HR 1313, now rapidly making its way through the U.S. Congress, would eviscerate GINA. It would exempt employer “workplace wellness” programs from GINA and the Americans with Disabilities Act. A “wellness program” seems innocent enough, but HR 1313 provides that an employee can be required to undergo and share the results of genetic testing of themselves or family members. Employers could even sell the genetic information for marketing purposes.
In essence, HR 1313 would allow employers to coerce employees into “volunteering” for such “wellness programs” by imposing penalties of up to 30 percent of the cost of health insurance on employees who decline.
Each of us has 20,000 genes, and chances are that someday genetic links to illness will be found in each of us. In principle, knowing these connections will enable us — or our children and grandchildren — to reduce our risk of serious illness. This is the hope of individualized medicine.
But this hope will die if HR 1313 goes forward. Lifesaving research in genetics will be useless if people are afraid to access it. And more preventable deaths, like Julie’s, will occur as people refuse to learn of their genetic information that could save their lives.
Moreover, the perception that their genetic information might be misused by their employers or insurers is likely to scare people from sharing their genetic information to advance medical research. Without access to this information, the vision of personalized treatments for cancer and other debilitating and life threatening conditions may never be realized.
In 2008, GINA passed Congress with only one dissenting vote and was signed by President George W. Bush. Please let your members of Congress know that the current federal protections surrounding genetic information should remain in place. We all have the right to lifesaving information without fear of losing our jobs or insurance.
Let’s continue to translate genetics research into saving lives.