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Today, with the Genomic Revolution underway, it is getting easier and easier for employers and health care providers to access your genetic information. Louise believes that information should be protected the same way as other personal information – and not used to discriminate.
Louise authored the landmark Genetic Information Nondiscrimination Act (GINA), which was signed into law by President George W. Bush in 2008 after a fourteen-year battle in Congress. Prior to GINA, employers could fire or refuse to hire someone based on their family history of breast cancer or other hereditary illnesses.
The late Senator Ted Kennedy called it “the first civil rights battle of the new century.”
For many years, genetic discrimination by employers and health insurers dissuaded men and women from genetic testing and participating in clinical trials. GINA has done more than stamp out a form of discrimination. It has also helped our country open up a field of scientific research that holds as much promise as any other in history. Genetic research has since led to breakthroughs in cancer treatments and personalized medicine. World renowned physician-geneticist Francis Collins has called genetic sequencing research “an adventure that beats going to the moon or splitting the atom.”
Louise also continues to oversee the implementation of the law and evaluate whether policy improvements are needed to keep your genetic information safe.