%0 Journal Article
%T Duchenne Muscular Dystrophy Newborn Screening, a Case Study for Examining Ethical and Legal Issues for Pilots for Emerging Disorders: Considerations and Recommendations
%A Aaron Goldenberg
%A Amy Brower
%A Annie Kennedy
%A Edward Goldman
%A Kristin Stephenson
%A Michael Watson
%A Michele A. Lloyd-Puryear
%A R. Rodney Howell
%A Thomas O. Crawford
%A Tracy Trotter
%J -
%D 2018
%R https://doi.org/10.3390/ijns4010006
%X Abstract Duchenne muscular dystrophy (DMD/Duchenne) is one of the ten most severe and common pediatric genetic diseases and affects an estimated 1 in every 5000 male births. While Duchenne is a 100% fatal disease, the clinical community has demonstrated that immediate identification and early clinical interventions can add years, even decades to an individual¡¯s life span. In anticipation of the changing therapeutic landscape for the Duchenne community, Parent Project Muscular Dystrophy established a newborn screening (NBS) initiative. This initiative included a Bioethics and Legal Issues Workgroup to consider the bioethics and legal issues of NBS for Duchenne. The workgroup¡¯s discussion focused only on Duchenne NBS and met through conference calls over a one-year period of time seeking consensus on various identified issues. This article reports on the findings and recommendations from that workgroup. View Full-Tex
%K Duchenne
%K muscular dystrophy
%K newborn screening
%K carrier
%K X-linked disease
%U https://www.mdpi.com/2409-515X/4/1/6