02/25/2009 - Good morning and thank you for the opportunity to testify today. I am Susannah Baruch, the Director of Law and Policy at the Genetics and Public Policy Center, supported by The Pew Charitable Trusts at Johns Hopkins University. Our mission is to help policy makers and the public better understand and respond to the challenges and opportunities arising from rapid advances in human genetics and its application to healthcare. Previously, I was involved with GINA as Director of Health Law Policy at the National Partnership for Women and Families and in 2000, I had the opportunity to provide testimony to the United States Senate on the topic of genetic testing in the workplace.
Scientists and genetic researchers increasingly have the ability to uncover genetic factors that contribute to health and disease. But for too long, patients’ fear of genetic discrimination has interfered with our ability to maximize the benefits of genetic medicine. We know that in the past, patients have passed up genetic testing that could benefit their health, and have gone to great lengths to keep genetic information secret – even from their own doctors. With the passage of GINA and its implementation, we welcome a new era. There are many factors an individual may consider in deciding whether to take a genetic test, but the fear of discrimination must not be one of them.
Read the full testimony on the Genetics & Public Policy Center's Web site (PDF).
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.