Collection of Newborn Screening Videos Provides Unique Forum for Information Sharing

WASHINGTON, DC – April 29, 2010 – As part of the Consumer Focused Newborn Screening projects, Genetic Alliance created a playlist on the Genetic Alliance YouTube Channel that showcases a selection of introductory newborn screening videos from various individuals and stakeholder organizations.

“The perspectives of consumers and families are integral to the advancement of the newborn screening system,” said Sharon Terry, president and chief executive officer of Genetic Alliance. “This playlist gives consumers and healthcare providers alike a place to learn and share information in a novel, multimedia format.”

The playlist provides a convenient forum for learning about newborn screening and sharing and distributing that knowledge. Viewers can comment on videos that they feel are especially relevant and participate in dialogues around the content presented in the videos. Browse the playlist.

“We look forward to expanding this resource to cover a variety of topics in more depth in order to best meet the needs of all babies born in this country,” said Natasha Bonhomme, vice president of strategic development. “This playlist is a first step toward a comprehensive, widely accessible learning forum that gives people the opportunity to understand newborn screening from a range of perspectives.”

The Consumer Focused Newborn Screening projects examine consumer perspectives on issues inherent to newborn screening, such as false positives and carrier screening. The newborn screening playlist was created in part with funding through a cooperative agreement from the Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services Administration.

For more information about Genetic Alliance’s newborn screening programs, please visit www.geneticalliance.org/nbs

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About Genetic Alliance
Genetic Alliance transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making. For more information about Genetic Alliance, visit http://www.geneticalliance.org.