With a focus on privacy, this webinar discusses the roles of HIPAA, IRB regulations, consent, de-identification, and the honest broker in newborn screening. Presented are the overarching parental and public attitudes towards NBS and privacy, and the common positions held regarding identifiability and assumed risk. The webinar contains a brief description of the Genetic Information Non-Discrimination Act (GINA), and a detailed account of the policies of New York state for the access and use of NBS specimens.
Session 3: Protection of Privacy
Friday, June 28, 2013
Edward Goldman, JD; Aaron Goldenberg, PhD, MPH; Ann Willey, PhD, JD
Webinar slides (PDF):