{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T03:48:23Z","timestamp":1769399303938,"version":"3.49.0"},"reference-count":38,"publisher":"Wiley","issue":"13","license":[{"start":{"date-parts":[[2022,11,15]],"date-time":"2022-11-15T00:00:00Z","timestamp":1668470400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["obgyn.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Prenatal Diagnosis"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Reproductive genetic carrier screening (RGCS) panels often include genes associated with non\u2010syndromic hearing loss (NSHL) despite a lack of evidence of acceptability. Although some couples take steps to avoid having a child who is deaf, there are effective interventions for children who are deaf. There is no consensus whether deafness is considered a disabling condition.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>This study explored views of people who had RGCS, without genes for NSHL, about this topic. Online surveys were sent to 2186 people who had a low chance RGCS result and 655 completed the survey (participation rate 30%).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Sixty\u2010three percent (<jats:italic>N<\/jats:italic>\u00a0=\u00a0412) think deafness is a serious health condition. The majority agreed (60%, <jats:italic>N<\/jats:italic>\u00a0=\u00a0391) that with support (i.e. hearing aids\/cochlear implants) deafness is a minor condition in children. Most (84%, <jats:italic>N<\/jats:italic>\u00a0=\u00a0545) agreed genes for NSHL should be included in RGCS. Thirty\u2010five percent (<jats:italic>N<\/jats:italic>\u00a0=\u00a0231) indicated they would make different reproductive decisions if they had an increased chance of having a child born deaf; 31% would not change their reproductive plans and 34% were unsure what they would do.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>While the majority support inclusion of genes associated with NSHL in RGCS, there was uncertainty about the severity of deafness as a health condition and there was no consensus on whether it is a health condition that warrants changing reproductive decisions.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pd.6253","type":"journal-article","created":{"date-parts":[[2022,10,27]],"date-time":"2022-10-27T04:39:30Z","timestamp":1666845570000},"page":"1658-1666","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Views of reproductive genetic carrier screening participants regarding screening for genes associated with non\u2010syndromic hearing loss"],"prefix":"10.1002","volume":"42","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5814-3894","authenticated-orcid":false,"given":"Lucinda","family":"Freeman","sequence":"first","affiliation":[{"name":"School of Women's and Children's Health UNSW  Randwick New South Wales Australia"},{"name":"Graduate School of Health University of Technology Sydney  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin B.","family":"Delatycki","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Parkville Victoria Australia"},{"name":"Victorian Clinical Genetics Services  Parkville Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jackie","family":"Leach Scully","sequence":"additional","affiliation":[{"name":"Disability Innovation Institute UNSW  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Edwin P.","family":"Kirk","sequence":"additional","affiliation":[{"name":"School of Women's and Children's Health UNSW  Randwick New South Wales Australia"},{"name":"Centre for Clinical Genetics Sydney Children's Hospitals Network  Randwick New South Wales Australia"},{"name":"NSW Health Pathology East Genomics  Randwick New South Wales 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