{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T14:17:42Z","timestamp":1785507462807,"version":"3.56.0"},"reference-count":43,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T00:00:00Z","timestamp":1785456000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Int. J. Neonatal Screen.","IJNS"],"abstract":"<jats:p>X-linked adrenoleukodystrophy (X-ALD) is the most common peroxisomal disorder and is associated with serious clinical consequences. While newborn screening (NBS) could facilitate early identification and timely intervention, its implementation for X-ALD remains controversial due to ethical concerns arising from its X-linked recessive inheritance pattern, particularly regarding female newborns. This study aims to explore the perspectives of healthcare professionals and the general public on NBS for X-ALD in Hong Kong. An online survey with 20 quantitative questions on ethical considerations was conducted from May to August 2024. Among a total of 259 responses, most respondents (99.2%) supported NBS for their male newborns, primarily because it facilitates early diagnosis and effective management. The majority of the respondents were in favor of offering NBS to female newborns, citing potential benefits for the management of adult-onset disease, enhanced family planning and support, and opportunities for extended family screening. However, some respondents expressed concerns regarding (1) psychological stress and anxiety from uncertain disease onset and frequent monitoring; (2) potential genetic discrimination and adverse impact on insurance premiums\/coverage; (3) affordability and accessibility of expensive treatments, such as gene therapy; and (4) ethical issues regarding children\u2019s \u201cright to an open future\u201d, particularly for late-onset female X-ALD. To address these concerns while respecting family autonomy, we propose an opt-in system with clear, balanced information for parents, combined with a three-tier screening algorithm. In summary, while inclusion of X-ALD in Hong Kong\u2019s NBS program receives strong community support, targeted measures are needed to mitigate the identified ethical and practical barriers.<\/jats:p>","DOI":"10.3390\/ijns12030063","type":"journal-article","created":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T13:23:20Z","timestamp":1785504200000},"page":"63","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Attitudes Toward Sex-Specific Versus Universal Newborn Screening for X-Linked Adrenoleukodystrophy in Hong Kong"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1419-489X","authenticated-orcid":false,"given":"Chloe Miu","family":"Mak","sequence":"first","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hoi Ying","family":"Wu","sequence":"additional","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ariel Ying","family":"Wong","sequence":"additional","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felicite Enyu","family":"Song","sequence":"additional","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9099-4720","authenticated-orcid":false,"given":"Toby Chun Hei","family":"Chan","sequence":"additional","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheuk Wing","family":"Fung","sequence":"additional","affiliation":[{"name":"Metabolic Medicine Unit, Department of Pediatrics and Adolescent Medicine, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-6182-0972","authenticated-orcid":false,"given":"Suet Na","family":"Wong","sequence":"additional","affiliation":[{"name":"Neurology Unit, Department of Pediatrics and Adolescent Medicine, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Edgar Wai Lok","family":"Hau","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3861-7033","authenticated-orcid":false,"given":"Matthew Chun Wing","family":"Yeung","sequence":"additional","affiliation":[{"name":"Newborn Screening Laboratory, Department of Pathology, Hong Kong Children\u2019s Hospital, Hong Kong SAR, China"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2026,7,31]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","unstructured":"Priestley, J.R.C., Adang, L.A., Drewes Williams, S., Lichter-Konecki, U., Menello, C., Engelhardt, N.M., DiPerna, J.C., DiBoscio, B., Ahrens-Nicklas, R.C., and Edmondson, A.C. 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