Sharon Terry

FTD_logo3WASHINGTON, DC (October 8, 2014)—Free the Data, a national coalition of organizations dedicated to freeing genetic information, announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) was named its Honorary Chair.

“The time for hoarding data as a commodity is over,” said Sharon Terry, President and CEO of Genetic Alliance, the nonprofit health advocacy organization that coordinates Free the Data. “The Coalition is thrilled to have a powerful partnership with Congresswoman Wasserman Schultz. In Breast Cancer Awareness Month, we are confident that the Congresswoman adds strength and momentum to the Free the Data movement, particularly as we work to free data associated with breast and ovarian cancer!”

More than half a million people in the United States have a mutation in the BRCA1 or 2 genes, which can dramatically increase the likelihood of developing hereditary breast or ovarian cancer. Knowledge about these mutations is essential for genetic counselors, clinicians, and researchers to advance patient care and research. However, because the private company that owns the vast majority of this data does not share it, much of it is unavailable to individuals and their clinicians as they face important, lifesaving treatment decisions.

“Increased access to and understanding of genetic information is a public health priority, because the more we learn about how genetics influence disease, the more lives we can save,” said Rep. Wasserman Schultz. “Speaking as someone who lacked information about my own genetics when I was diagnosed with breast cancer, I believe Free the Data’s work to collect and disseminate such essential information is vitally important.”

When diagnosed with breast cancer at the age of 41, Rep. Wasserman Schultz discovered she had a mutation in the BRCA2 gene, but could not get a second opinion due to gene patents that existed at the time. In a decision based on just a single test from the company holding the patents, she underwent seven surgeries in 2008, including a double mastectomy—an experience the Congresswoman has translated into serving as a strong advocate for free and open genetic information.

“Everyone who wants to be able to share their genetic information and learn from others should have that ability, and to that end I am honored to join Free the Data as their Honorary Chair,” Rep. Wasserman Schultz added.

Rep. Wasserman Schultz has been an active champion for breast cancer awareness and survivors, authoring legislation to help young women better detect and fight the disease and co-founding an annual women’s softball game to support young survivors. The Breast Cancer Education and Awareness Requires Learning Young Act, known as the EARLY Act, became law as part of the Affordable Care Act and is currently up for its five-year reauthorization with strong bipartisan support in the House and Senate.

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About Free the Data

Free the Data works to fill the genetic information gap by providing men and women with tools to safely share genetic variant data and the associated health information. By inviting women and men to share their mutations and clinical data in a safe way, with dynamic and granular sharing, privacy and data access preferences, an open-access resource is populated to gain a better understanding of hereditary breast and ovarian cancer.

Free the Data is the work of a consortium of organizations, managed by Genetic Alliance and supported by InVitae, Private Access, the University of California, San Francisco (UCSF), the International Collaboration for Clinical Genomics, Syapse, and Captricity. The mutation data is deposited in ClinVar, a freely accessible public archive of genetic variant data maintained by the National Center for Biotechnology Information (NCBI) at the National Institutes of Health (NIH).  For more information or to join the Free the Data Coalition, please visit www.free-the-data.org.

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