{"title":"The Reform of the Newborn Screening Policy: Spinal Muscular Atrophy.","authors":"Blanka Bartos","doi":"","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":48665,"journal":{"name":"Issues in Law & Medicine","volume":null,"pages":null},"PeriodicalIF":0.5000,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Issues in Law & Medicine","FirstCategoryId":"3","ListUrlMain":"","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"LAW","Score":null,"Total":0}
引用次数: 0
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.
期刊介绍：
Issues in Law & Medicine is a peer reviewed professional journal published semiannually. Founded in 1985, ILM is co-sponsored by the National Legal Center for the Medically Dependent & Disabled, Inc. and the Watson Bowes Research Institute.
Issues is devoted to providing technical and informational assistance to attorneys, health care professionals, educators and administrators on legal, medical, and ethical issues arising from health care decisions. Its subscribers include law libraries, medical libraries, university libraries, court libraries, attorneys, physicians, university professors and other scholars, primarily in the U.S. and Canada, but also in Austria, Australia, Belgium, Brazil, Italy, The Netherlands, New Zealand, Japan, Russia, South Korea, Spain, Taiwan, and the United Kingdom.
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