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Review
. 2018 Jan 25;4(1):6.
doi: 10.3390/ijns4010006. eCollection 2018 Mar.

Duchenne Muscular Dystrophy Newborn Screening, a Case Study for Examining Ethical and Legal Issues for Pilots for Emerging Disorders: Considerations and Recommendations

Michele A Lloyd-Puryear  1 , Thomas O Crawford  2 , Amy Brower  3 , Kristin Stephenson  4 , Tracy Trotter  5 , Edward Goldman  6 , Aaron Goldenberg  7 , R Rodney Howell  8 , Annie Kennedy  1 , Michael Watson  3
Affiliations
Review

Duchenne Muscular Dystrophy Newborn Screening, a Case Study for Examining Ethical and Legal Issues for Pilots for Emerging Disorders: Considerations and Recommendations

Michele A Lloyd-Puryear et al. Int J Neonatal Screen. .

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.

Keywords: Duchenne; X-linked disease; carrier; muscular dystrophy; newborn screening.

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Conflict of interest statement

Conflicts of InterestThe authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
Informed Consent Process for DMD NBS.
See this image and copyright information in PMC

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