Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research Workshop Summary (2010) / Chapter Skim
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6 Parental and Public Education
6 Parental and Public Education
Pages 45-50
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From page 45... ...
THE NEED FOR OuTREACH As Sharon Kardia observed, people tend not to know much about newborn screening programs. They also know very little about how residual dried blood spots are used after they are collected and tested.
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From page 46... ...
FORMS OF OuTREACH Only eight of the states whose laws and regulations could be identified require that information provided to parents regarding newborn screening programs discuss the storage and use of residual dried blood spots, said
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Caggana observed that one effective approach is to describe state policy in a very brief form in either a brochure for parents or on the screening form itself. In New York State, the brochure that parents receive has contact information and gives parents a number to call if they want to opt out of any research use or have a screening specimen destroyed.
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From page 48... ...
Partnerships directed toward broad public education campaigns could have specific benefits for newborn screening programs. The states may need some help from the federal government to set up the necessary infrastructure for communication, Fleischman said.
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From page 49... ...
Virtual communities might accelerate social change, but the "people part" of change still tends to be slow.
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