{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T16:13:44Z","timestamp":1785255224854,"version":"3.55.0"},"reference-count":67,"publisher":"American Academy of Pediatrics (AAP)","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,3,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>Clinicians practicing in a modern NICU are noticing an increase in the proportion of patients who undergo genetic testing as well as changes in the types of genetic testing patients receive. These trends are not surprising given the increasing recognition of the genetic causes of neonatal illness and recent advances in genetic technology. Yet, the expansion of genetic testing in the NICU also raises a number of ethical questions. In this article, we will review the ethical issues raised by genetic testing, with a focus on the practical implications for neonatologists. First, we outline the complexities of measuring benefit, or utility, for neonatal genetic testing. Next, we discuss potential harms such as inequity, unexpected findings, disability biases, and legal risks. Finally, we conclude with a discussion of ethical issues related to consent for genetic testing. Throughout this article, we highlight solutions to challenges toward the ultimate goal of minimizing harms and maximizing the substantial potential benefits of genetic medicine in the NICU.<\/jats:p>","DOI":"10.1542\/neo.25-3-e127","type":"journal-article","created":{"date-parts":[[2024,3,1]],"date-time":"2024-03-01T07:18:10Z","timestamp":1709277490000},"page":"e127-e138","source":"Crossref","is-referenced-by-count":8,"title":["Ethical and Legal Issues Surrounding Genetic Testing in the NICU"],"prefix":"10.1542","volume":"25","author":[{"given":"Katharine P.","family":"Callahan","sequence":"first","affiliation":[{"name":"*Division of Neonatology, The Children\u2019s Hospital of Philadelphia, Philadelphia, PA"},{"name":"\u2020Department of Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen W.","family":"Clayton","sequence":"additional","affiliation":[{"name":"\u2021Center for Biomedical Ethics and Society, Department of Pediatrics, Vanderbilt University Medical Center, and School of Law, Vanderbilt University, Nashville, TN"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy A.","family":"Lemke","sequence":"additional","affiliation":[{"name":"\u00a7Department of Pediatrics, Norton Children\u2019s Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, KY"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bimal P.","family":"Chaudhari","sequence":"additional","affiliation":[{"name":"\u00b6Divisions of Neonatology and Genetics and Genomic Medicine, Steve and Cindy Rasmussen Institute for Genomic Medicine, Nationwide Children\u2019s Hospital, Columbus, OH"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara L.","family":"Wenger","sequence":"additional","affiliation":[{"name":"\u2016Division of Medical Genetics, University of Washington, Seattle, WA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison N. J.","family":"Lyle","sequence":"additional","affiliation":[{"name":"**Division of Neonatology, Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kyle B.","family":"Brothers","sequence":"additional","affiliation":[{"name":"\u00a7Department of Pediatrics, Norton Children\u2019s Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, KY"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2024,3,1]]},"reference":[{"issue":"1","key":"2024030107180816400_B1","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1038\/s41525-018-0053-8","article-title":"Meta-analysis of the diagnostic and clinical utility of genome and exome sequencing and chromosomal microarray in children with suspected genetic diseases","volume":"3","author":"Clark","year":"2018","journal-title":"NPJ Genom Med"},{"issue":"12","key":"2024030107180816400_B2","doi-asserted-by":"crossref","first-page":"1611","DOI":"10.1038\/s41372-019-0451-5","article-title":"Infant mortality: the contribution of genetic disorders","volume":"39","author":"Wojcik","year":"2019","journal-title":"J Perinatol"},{"key":"2024030107180816400_B3","unstructured":"National Human Genome Research Institute. 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