{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,9]],"date-time":"2026-06-09T14:07:07Z","timestamp":1781014027516,"version":"3.54.1"},"reference-count":53,"publisher":"Elsevier BV","issue":"9","license":[{"start":{"date-parts":[[2022,9,1]],"date-time":"2022-09-01T00:00:00Z","timestamp":1661990400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2022,9,1]],"date-time":"2022-09-01T00:00:00Z","timestamp":1661990400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2023,9,1]],"date-time":"2023-09-01T00:00:00Z","timestamp":1693526400000},"content-version":"vor","delay-in-days":365,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"content-domain":{"domain":["gimjournal.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Genetics in Medicine"],"published-print":{"date-parts":[[2022,9]]},"DOI":"10.1016\/j.gim.2022.05.005","type":"journal-article","created":{"date-parts":[[2022,6,3]],"date-time":"2022-06-03T17:10:51Z","timestamp":1654276251000},"page":"1803-1813","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":15,"title":["The views of people with a lived experience of deafness and the general public regarding genetic testing for deafness in the reproductive setting: A\u00a0systematic review"],"prefix":"10.1016","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5814-3894","authenticated-orcid":false,"given":"Lucinda","family":"Freeman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Righetti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin B.","family":"Delatycki","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jackie Leach","family":"Scully","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Edwin P.","family":"Kirk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"6628","key":"10.1016\/j.gim.2022.05.005_bib1","doi-asserted-by":"crossref","first-page":"80","DOI":"10.1038\/387080a0","article-title":"Connexin 26 mutations in hereditary non-syndromic sensorineural deafness","volume":"387","author":"Kelsell","year":"1997","journal-title":"Nature"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib2","doi-asserted-by":"crossref","first-page":"e1","DOI":"10.1038\/ejhg.2015.271","article-title":"Responsible implementation of expanded carrier screening","volume":"24","author":"Henneman","year":"2016","journal-title":"Eur J Hum Genet"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib3","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1016\/j.jogn.2016.08.012","article-title":"Attitudes of European geneticists regarding expanded carrier screening","volume":"46","author":"Janssens","year":"2017","journal-title":"J\u00a0Obstet Gynecol Neonatal Nurs"},{"issue":"3","key":"10.1016\/j.gim.2022.05.005_bib4","doi-asserted-by":"crossref","first-page":"106","DOI":"10.31128\/AJGP-10-18-4725","article-title":"Preconception and antenatal carrier screening for genetic conditions: the critical role of general practitioners","volume":"48","author":"Delatycki","year":"2019","journal-title":"Aust J Gen Pract"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib5","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1038\/s41431-020-0685-x","article-title":"Gene selection for the Australian Reproductive Genetic Carrier Screening Project (\u201cMackenzie\u2019s Mission\u201d)","volume":"29","author":"Kirk","year":"2021","journal-title":"Eur J Hum Genet"},{"issue":"3","key":"10.1016\/j.gim.2022.05.005_bib6","doi-asserted-by":"crossref","first-page":"301","DOI":"10.1002\/pd.5611","article-title":"International perspectives on the implementation of reproductive carrier screening","volume":"40","author":"Delatycki","year":"2020","journal-title":"Prenat Diagn"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib7","first-page":"233","article-title":"The meaning of \u201cserious disability\u201d in the legal regulation of prenatal and neonatal decision-making","volume":"16","author":"Savell","year":"2008","journal-title":"J\u00a0Law Med"},{"key":"10.1016\/j.gim.2022.05.005_bib8","article-title":"Ethical considerations in gene selection for reproductive carrier screening","author":"Dive","year":"2021","journal-title":"Hum Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib9","doi-asserted-by":"crossref","first-page":"202","DOI":"10.1093\/phe\/phab017","article-title":"Ethics of reproductive genetic carrier screening: from the clinic to the population","volume":"14","author":"Dive","year":"2021","journal-title":"Public Health Ethics"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib10","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1038\/s41431-021-00962-2","article-title":"What is a \u2018serious\u2019 genetic condition? The perceptions of people living with genetic conditions","volume":"30","author":"Boardman","year":"2022","journal-title":"Eur J Hum Genet"},{"issue":"4","key":"10.1016\/j.gim.2022.05.005_bib11","doi-asserted-by":"crossref","first-page":"356","DOI":"10.1353\/sls.2002.0019","article-title":"Do deaf people have a disability?","volume":"2","author":"Lane","year":"2002","journal-title":"Sign Lang Stud"},{"key":"10.1016\/j.gim.2022.05.005_bib12","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1080\/14034950510033318","article-title":"Deafhood: a concept stressing possibilities, not deficits1","volume":"66","author":"Ladd","year":"2005","journal-title":"Scand J Public Health Suppl"},{"issue":"5","key":"10.1016\/j.gim.2022.05.005_bib13","doi-asserted-by":"crossref","first-page":"S1","DOI":"10.2307\/3527746","article-title":"The disability rights critique of prenatal genetic testing. Reflections and recommendations","volume":"29","author":"Parens","year":"1999","journal-title":"Hastings Cent Rep"},{"issue":"9","key":"10.1016\/j.gim.2022.05.005_bib14","doi-asserted-by":"crossref","first-page":"913","DOI":"10.1002\/pd.4644","article-title":"Patient attitudes towards prenatal diagnostic testing for inherited retinal disease","volume":"35","author":"Ahmed","year":"2015","journal-title":"Prenat Diagn"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib15","doi-asserted-by":"crossref","first-page":"941","DOI":"10.1002\/mgg3.463","article-title":"How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening","volume":"6","author":"Boardman","year":"2018","journal-title":"Mol Genet Genomic Med"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib16","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1007\/s10897-017-0122-7","article-title":"Impairment experiences, identity and attitudes towards genetic screening: the views of people with spinal muscular atrophy","volume":"27","author":"Boardman","year":"2018","journal-title":"J\u00a0Genet Couns"},{"issue":"3","key":"10.1016\/j.gim.2022.05.005_bib17","doi-asserted-by":"crossref","first-page":"616","DOI":"10.1007\/s10897-017-0160-1","article-title":"Clinical utility of expanded carrier screening: reproductive behaviors of at-risk couples","volume":"27","author":"Ghiossi","year":"2018","journal-title":"J\u00a0Genet Couns"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib18","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1007\/s11019-019-09922-6","article-title":"Is it ever morally permissible to select for deafness in one\u2019s child?","volume":"23","author":"Wallis","year":"2020","journal-title":"Med Health Care Philos"},{"issue":"10","key":"10.1016\/j.gim.2022.05.005_bib19","doi-asserted-by":"crossref","first-page":"1793","DOI":"10.1038\/s41436-021-01203-z","article-title":"Screening for autosomal recessive and X-linked conditions during pregnancy and preconception: a practice resource of the American College of Medical Genetics and Genomics (ACMG)","volume":"23","author":"Gregg","year":"2021","journal-title":"Genet Med"},{"issue":"5","key":"10.1016\/j.gim.2022.05.005_bib20","doi-asserted-by":"crossref","first-page":"691","DOI":"10.1038\/s41431-019-0351-3","article-title":"Feasibility of couple-based expanded carrier screening offered by general practitioners","volume":"27","author":"Schuurmans","year":"2019","journal-title":"Eur J Hum Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib21","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1002\/ajmg.a.38031","article-title":"Population screening for spinal muscular atrophy: a mixed methods study of the views of affected families","volume":"173","author":"Boardman","year":"2017","journal-title":"Am J Med Genet A"},{"issue":"9","key":"10.1016\/j.gim.2022.05.005_bib22","doi-asserted-by":"crossref","first-page":"1284","DOI":"10.1177\/1049732302238251","article-title":"Appraising the evidence: reviewing disparate data systematically","volume":"12","author":"Hawker","year":"2002","journal-title":"Qual Health Res"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib23","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual Res Pyschol"},{"issue":"4","key":"10.1016\/j.gim.2022.05.005_bib24","doi-asserted-by":"crossref","first-page":"1175","DOI":"10.1086\/302060","article-title":"Attitudes of deaf adults toward genetic testing for hereditary deafness","volume":"63","author":"Middleton","year":"1998","journal-title":"Am J Hum Genet"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib25","doi-asserted-by":"crossref","first-page":"1621","DOI":"10.1086\/316901","article-title":"Parental attitudes toward genetic testing for pediatric deafness","volume":"67","author":"Brunger","year":"2000","journal-title":"Am J Hum Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib26","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1023\/A:1009439630457","article-title":"Prenatal diagnosis for inherited deafness\u2014what is the potential demand?","volume":"10","author":"Middleton","year":"2001","journal-title":"J\u00a0Genet Couns"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib27","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1002\/ajmg.10676","article-title":"Genetic testing for hearing loss: different motivations for the same outcome","volume":"113","author":"Dagan","year":"2002","journal-title":"Am J Med Genet"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib28","doi-asserted-by":"crossref","first-page":"449","DOI":"10.1136\/jmg.39.6.449","article-title":"Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss","volume":"39","author":"Stern","year":"2002","journal-title":"J\u00a0Med Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib29","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1097\/01.GIM.0000055200.52906.75","article-title":"Attitudes of the broader hearing, deaf, and hard-of-hearing community toward genetic testing for deafness","volume":"5","author":"Martinez","year":"2003","journal-title":"Genet Med"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib30","doi-asserted-by":"crossref","DOI":"10.1136\/jmg.40.6.e80","article-title":"Genetic information but not termination: pregnant women\u2019s attitudes and willingness to pay for carrier screening for deafness genes","volume":"40","author":"Ryan","year":"2003","journal-title":"J\u00a0Med Genet"},{"issue":"12","key":"10.1016\/j.gim.2022.05.005_bib31","doi-asserted-by":"crossref","first-page":"779","DOI":"10.1097\/01.gim.0000250501.59830.ff","article-title":"A\u00a0focus group study of consumer attitudes toward genetic testing and newborn screening for deafness","volume":"8","author":"Burton","year":"2006","journal-title":"Genet Med"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib32","doi-asserted-by":"crossref","first-page":"51","DOI":"10.1007\/s10897-005-9003-6","article-title":"Attitudes to genetic testing for deafness: the importance of informed choice","volume":"15","author":"Guillemin","year":"2006","journal-title":"J\u00a0Genet Couns"},{"issue":"14","key":"10.1016\/j.gim.2022.05.005_bib33","doi-asserted-by":"crossref","first-page":"1533","DOI":"10.1002\/ajmg.a.31731","article-title":"Parental narratives on genetic testing for children with hearing loss: a qualitative inquiry","volume":"143A","author":"Steinberg","year":"2007","journal-title":"Am J Med Genet A"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib34","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1007\/s10897-008-9199-3","article-title":"Consumers\u2019 desire towards current and prospective reproductive genetic testing","volume":"18","author":"Hathaway","year":"2009","journal-title":"J\u00a0Genet Couns"},{"issue":"12","key":"10.1016\/j.gim.2022.05.005_bib35","doi-asserted-by":"crossref","first-page":"722","DOI":"10.1136\/jme.2009.030429","article-title":"Genetic selection for deafness: the views of hearing children of deaf adults","volume":"35","author":"Mand","year":"2009","journal-title":"J\u00a0Med Ethics"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib36","doi-asserted-by":"crossref","first-page":"1169","DOI":"10.1002\/ajmg.a.32853","article-title":"A\u00a0prospective, longitudinal study of the impact of GJB2\/GJB6 genetic testing on the beliefs and attitudes of parents of deaf and hard-of-hearing infants","volume":"149A","author":"Palmer","year":"2009","journal-title":"Am J Med Genet A"},{"issue":"10","key":"10.1016\/j.gim.2022.05.005_bib37","doi-asserted-by":"crossref","first-page":"1122","DOI":"10.1016\/j.ijporl.2010.06.012","article-title":"Parental attitudes toward genetic testing for prelingual deafness in China","volume":"74","author":"Fu","year":"2010","journal-title":"Int J Pediatr Otorhinolaryngol"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib38","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1002\/ajmg.a.35692","article-title":"Do parental perceptions and motivations towards genetic testing and prenatal diagnosis for deafness vary in different cultures?","volume":"161A","author":"Nahar","year":"2013","journal-title":"Am J Med Genet A"},{"issue":"2","key":"10.1016\/j.gim.2022.05.005_bib39","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1002\/pd.4273","article-title":"Attitudes of Saudi parents with a deaf child towards prenatal diagnosis and termination of pregnancy","volume":"34","author":"Alsulaiman","year":"2014","journal-title":"Prenat Diagn"},{"issue":"6","key":"10.1016\/j.gim.2022.05.005_bib40","doi-asserted-by":"crossref","first-page":"1037","DOI":"10.1007\/s10897-015-9843-7","article-title":"Perception of genetic testing for deafness and factors associated with interest in genetic testing among deaf people in a selected population in sub-Saharan Africa","volume":"24","author":"Adedokun","year":"2015","journal-title":"J\u00a0Genet Couns"},{"issue":"12","key":"10.1016\/j.gim.2022.05.005_bib41","doi-asserted-by":"crossref","first-page":"3180","DOI":"10.1002\/ajmg.a.37932","article-title":"Attitudes toward carrier screening and prenatal diagnosis for recessive hereditary deafness among the educated population in urban China","volume":"170","author":"Fu","year":"2016","journal-title":"Am J Med Genet A"},{"issue":"4","key":"10.1016\/j.gim.2022.05.005_bib42","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1136\/medethics-2018-105167","article-title":"\u2018Is it better not to know certain things?\u2019: views of women who have undergone non-invasive prenatal testing on its possible future applications","volume":"45","author":"Bowman-Smart","year":"2019","journal-title":"J\u00a0Med Ethics"},{"issue":"12","key":"10.1016\/j.gim.2022.05.005_bib43","doi-asserted-by":"crossref","first-page":"104075","DOI":"10.1016\/j.ejmg.2020.104075","article-title":"Which types of conditions should be included in reproductive genetic carrier screening? Views of parents of children with a genetic condition","volume":"63","author":"Thomas","year":"2020","journal-title":"Eur J Med Genet"},{"key":"10.1016\/j.gim.2022.05.005_bib44","doi-asserted-by":"crossref","first-page":"b2535","DOI":"10.1136\/bmj.b2535","article-title":"Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement","volume":"339","author":"Moher","year":"2009","journal-title":"BMJ"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib45","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1002\/ajmg.a.30051","article-title":"Attitudes of deaf individuals towards genetic testing","volume":"130A","author":"Taneja","year":"2004","journal-title":"Am J Med Genet A"},{"issue":"12","key":"10.1016\/j.gim.2022.05.005_bib46","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0114391","article-title":"Systematic classification of disease severity for evaluation of expanded carrier screening panels","volume":"9","author":"Lazarin","year":"2014","journal-title":"PLoS One"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib47","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1002\/jgc4.1355","article-title":"Attitudes toward population screening among people living with fragile X syndrome in the UK: \u2018I wouldn\u2019t wish him away, I\u2019d just wish his fragile X syndrome away\u2019","volume":"30","author":"Boardman","year":"2021","journal-title":"J\u00a0Genet Couns"},{"issue":"7","key":"10.1016\/j.gim.2022.05.005_bib48","doi-asserted-by":"crossref","DOI":"10.1002\/mgg3.803","article-title":"Attitudes of people with inherited retinal conditions toward gene editing technology","volume":"7","author":"Hoffman-Andrews","year":"2019","journal-title":"Mol Genet Genomic Med"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib49","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1002\/jgc4.1042","article-title":"\u201cI didn\u2019t take it too seriously because I\u2019d just never heard of it\u201d: experiential knowledge and genetic screening for thalassaemia in the UK","volume":"28","author":"Boardman","year":"2019","journal-title":"J\u00a0Genet Couns"},{"issue":"1","key":"10.1016\/j.gim.2022.05.005_bib50","doi-asserted-by":"crossref","first-page":"22","DOI":"10.1111\/cge.13174","article-title":"Review of patient decision-making factors and attitudes regarding preimplantation genetic diagnosis","volume":"94","author":"Genoff Garzon","year":"2018","journal-title":"Clin Genet"},{"issue":"8","key":"10.1016\/j.gim.2022.05.005_bib51","doi-asserted-by":"crossref","first-page":"631","DOI":"10.1002\/pd.954","article-title":"First-trimester prenatal screening for the common 35delG GJB2 mutation causing prelingual deafness","volume":"24","author":"Coviello","year":"2004","journal-title":"Prenat Diagn"},{"issue":"4 Pt 1","key":"10.1016\/j.gim.2022.05.005_bib52","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1097\/00005537-200104000-00027","article-title":"Genetic testing and genetic counseling for deafness: the future is here","volume":"111","author":"Brunger","year":"2001","journal-title":"Laryngoscope"},{"issue":"3","key":"10.1016\/j.gim.2022.05.005_bib53","doi-asserted-by":"crossref","first-page":"e649","DOI":"10.1542\/peds.2005-2551","article-title":"Changing their minds with time: a comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis","volume":"118","author":"Sawyer","year":"2006","journal-title":"Pediatrics"}],"container-title":["Genetics in Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022007717?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022007717?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T01:52:36Z","timestamp":1761097956000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1098360022007717"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,9]]},"references-count":53,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2022,9]]}},"alternative-id":["S1098360022007717"],"URL":"https:\/\/doi.org\/10.1016\/j.gim.2022.05.005","relation":{},"ISSN":["1098-3600"],"issn-type":[{"value":"1098-3600","type":"print"}],"subject":[],"published":{"date-parts":[[2022,9]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"The views of people with a lived experience of deafness and the general public regarding genetic testing for deafness in the reproductive setting: A\u00a0systematic review","name":"articletitle","label":"Article Title"},{"value":"Genetics in Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.gim.2022.05.005","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 by American College of Medical Genetics and Genomics. Published by Elsevier Inc.","name":"copyright","label":"Copyright"}]}}