Free the Data Announces New Partnership with Rep.Wasserman Schultz

WASHINGTON, 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 s...

Source: Disruptive Women in Health Care - October 9, 2014 Category: Consumer Health News Authors: dw at disruptivewomen.net Tags: Access Advocacy Cancer Genetics Policy Source Type: blogs