{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T21:24:31Z","timestamp":1790803471785,"version":"4.1.0"},"reference-count":9,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T00:00:00Z","timestamp":1781740800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Octapharma"},{"name":"Takeda"},{"id":[{"id":"https:\/\/ror.org\/04hjbmv12","id-type":"ROR","asserted-by":"publisher"}]},{"name":"CSL Behring"},{"name":"Kedrion Biopharma"},{"DOI":"10.13039\/100032727","name":"Pharming","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100032727","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100016387","name":"Grifols","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100016387","id-type":"DOI","asserted-by":"crossref"}]},{"name":"Sumitomo Pharma"},{"DOI":"10.13039\/100032359","name":"X4 Pharmaceuticals","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100032359","id-type":"DOI","asserted-by":"crossref"}]},{"id":[{"id":"https:\/\/ror.org\/01memxq33","id-type":"ROR","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100025230","name":"Biotest","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100025230","id-type":"DOI","asserted-by":"crossref"}]},{"name":"BD"},{"name":"Binding Site"},{"name":"Cane Medical Technology"},{"DOI":"10.13039\/100019719","name":"Chiesi","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100019719","id-type":"DOI","asserted-by":"crossref"}]},{"name":"ImmunoIVD"},{"name":"Koru"},{"name":"LACAR"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJNS"],"abstract":"<jats:p>The Ethics Session of the International Primary Immunodeficiency Congress (IPIC), held in November 2025 and organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), examined one of the most challenging developments emerging from genomic-enhanced newborn screening: the identification of serious, non-treatable disorders as incidental detection in programmes originally designed to detect severe combined immunodeficiency (SCID). Using a fictionalised clinical scenario based on the recent literature, the session explored the early diagnosis of ataxia\u2013telangiectasia (AT) detected through TREC-based screening. The discussion highlighted the clinical value and psychological risks associated with presymptomatic detection, the persistent shortcomings in parental consent processes, the systemic pressures created by expanding genomic testing, and the ethical challenges surrounding the reporting and management of incidental findings in screening. The debate underscored the need for internationally coordinated frameworks to guide the management of incidental detection in newborn screening as genomic technologies become more deeply embedded in routine public health practice.<\/jats:p>","DOI":"10.3390\/ijns12020043","type":"journal-article","created":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T10:25:34Z","timestamp":1781778334000},"page":"43","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Ethical and Clinical Boundaries in Genomics &amp; Newborn Screening: A Brief Report from IPIC2025"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6789-1563","authenticated-orcid":false,"given":"Raquel","family":"Yahyaoui","sequence":"first","affiliation":[{"name":"Laboratory of Metabolic Disorders and Newborn Screening Center of Eastern Andalusia, Hospital Regional Universitario de M\u00e1laga, 29011 Malaga, Spain"},{"name":"Biomedical Research Institute of M\u00e1laga, IBIMA-Plataforma BIONAND, 29590 Malaga, Spain"},{"name":"Departamento de Biomedicina y Odontolog\u00eda, Facultad de Ciencias Biom\u00e9dicas y Deporte, Universidad Europea de Andaluc\u00eda, 29010 Malaga, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8206-8102","authenticated-orcid":false,"given":"L\u00facia","family":"Mamede","sequence":"additional","affiliation":[{"name":"International Patient Organisation for Primary Immunodeficiencies (IPOPI), 1050 Brussels, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7181-0391","authenticated-orcid":false,"given":"Martin","family":"Zach","sequence":"additional","affiliation":[{"name":"Department of Analytic Philosophy, Institute of Philosophy of the Czech Academy of Sciences, Jilsk\u00e1 1, 110 00 Prague, Czech 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