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Article

The Reform of the Newborn Screening Policy: Spinal Muscular Atrophy

October 1, 2021
Edition: Fall 2021
Volume: 36
Issue: 2
Article: 4

Table of Contents

Abstract

One in every 10,000 children is born with SMA and half of them will not even live two years. It is a hereditary genetic disorder, where the muscles die. If it is discovered just after birth, newborns can get the newest medicines to maintain their health. Unlike some other common genetic diseases (e.g. Down-Syndrome), SMA can be screened prior to pregnancy to determine whether the parents are carriers. In Hungary, people have urged reform, due to the baby Zente case, whose story has reached millions. Australia and Germany have also discovered the need for screenings. However, the US has already introduced newborn screening for SMA, far ahead of European countries. National policies should adhere to the same path to contribute to appropriate family planning and to make the treatment available as soon as needed to provide a longer and better life for sick infants.

Keywords: newborn screening, SMA, family planning, national health policy, human rights

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About the Authors

Affiliation: Dr. Jur. at the University of Szeged (Hungary, 2017); LL.M. at the University of Toledo (USA) and University of Szeged (Hungary, 2014) in American law; LL.M. at the University Paris 2 Panthéon-Assas (France, 2018) in French, European, and International Business Law; and Ph.D. candidate at the University of Bourgogne Franche-Comté (France) in contracts and international trade law.