Not Without My Permission: Parents’ Willingness to Permit Use of NBS Sample for Research & Storage
Author(s)
Beth Tarini, MD, MS
Document Description
Newborn screening samples provide a potentially valuable resource for research aimed at improving health for children and adults. However, concerns about privacy and consent have triggered lawsuits from privacy advocates against the states of Minnesota and Texas. Ongoing debates about the use of newborn screening samples for research have occurred largely without a systematic assessment of public attitudes. In this presentation, we will discuss data from a national survey of parents about their willingness to permit use of newborn screening samples for research.
Date Added
July 16, 2009
Keywords
Newborn screening, biobanks, consent, research, genetic aalliance annual conference 2009, discovering openness in health systems
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Document Description
Newborn screening samples provide a potentially valuable resource for research aimed at improving health for children and adults. However, concerns about privacy and consent have triggered lawsuits from privacy advocates against the states of Minnesota and Texas. Ongoing debates about the use of newborn screening samples for research have occurred largely without a systematic assessment of public attitudes. In this presentation, we will discuss data from a national survey of parents about their willingness to permit use of newborn screening samples for research.
Date Added
July 16, 2009
Keywords
Newborn screening, biobanks, consent, research, genetic aalliance annual conference 2009, discovering openness in health systems