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Congresswoman Louise Slaughter

Representing the 25th District of New York

Rep. Slaughter, Doctors, Scientists, and Academics Come Together to Educate Public on Genetic Non-Discrimination

October 3, 2014
Press Release

WASHINGTON – Today, the Personal Genetics Education Project (pgEd) of Harvard Medical School held a briefing in cooperation with the offices of Congresswoman Louise M. Slaughter and Senator Elizabeth Warren to discuss recent advances in personal genetics and the Genetic Information Non-Discrimination Act (GINA), which protects Americans from discrimination in health care and employment based on their genetic information. The panel of doctors, scientists, lawyers and academics looked ahead to new challenges arising from developments in technology, medicine, genetics, neuroscience, and beyond, highlighting the opportunities and implications for civil rights brought about by the era of personal genetics and the memory of the country’s earlier experience with eugenics. For a detailed agenda and list of speakers, click here.

 

According to recent research, 80 percent of Americans and an alarming 55 percent of family doctors have little awareness about GINA. pgEd is spearheading a multi-faceted education program to raise public awareness on the coming wave of personal genetics, including genetic rights protections. pgEd has developed an interactive platform, called Map-Ed, in collaboration with Autodesk which gives people the chance to build their knowledge of genetic issues through short quizzes and pin themselves on a world map, creating a visual map of engagement. Rep. Slaughter, the original author of the Genetic Information Non-Discrimination Act, was the first person in the countryto pin herself on Map-Ed’s newly-launched quiz that tests knowledge about GINA.

 

“When scientists began the process of sequencing the human genome, I knew that such a project had incredible potential for the advancement of medicine, but also held risks for Americans who could be discriminated against if their boss or insurance company found out they were at risk for developing certain genetic conditions,” Rep. Slaughter said. “I wrote GINA to protect against that discrimination and I’m heartbroken that more people don’t know about the law. I’m so glad that pgEd has developed this quiz, and I encourage everyone to take it and educate themselves about their rights when it comes to their genetic information.”

 

Attendees at the briefing were encouraged to participate in Map-Ed quizzes at home or on their mobile devices and pin themselves as part of the pgEd campaign.

 

“pgEd developed Map-Ed to engage people in timely topics in genetics, and seeing people become more aware of their genetic civil rights pertaining to employment and health insurance is a great use of this tool,” said Dr. Ting Wu, Harvard Medical School Professor of Genetics and pgEd’s director and co-founder.  “We are thrilled to be working with Rep. Slaughter to highlight the protections she worked so hard to create through GINA. We look forward to seeing the map light up as people make their way through the quiz, and welcome all members of Congress to join us in spreading the word.”

 

The mission of the Personal Genetics Education Project (pgEd.org) is to raise awareness of personal genetics, make that awareness equally accessible across all segments of society, regardless of socioeconomic, educational, ethnic, religious, or cultural background, and instill confidence in individuals to ask questions, make informed decisions, and respect the opinions of others.

The third briefing in this series is scheduled for Thursday, March 19th, 2015 and will bring together esteemed experts to explore the emerging issues in genetic technology and its implications for policymakers.

 

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