{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,31]],"date-time":"2026-01-31T04:47:01Z","timestamp":1769834821658,"version":"3.49.0"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2015,5,27]],"date-time":"2015-05-27T00:00:00Z","timestamp":1432684800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Hum Genet"],"published-print":{"date-parts":[[2016,2]]},"DOI":"10.1038\/ejhg.2015.104","type":"journal-article","created":{"date-parts":[[2015,5,27]],"date-time":"2015-05-27T15:02:00Z","timestamp":1432738920000},"page":"164-170","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status"],"prefix":"10.1038","volume":"24","author":[{"given":"Melissa","family":"Noke","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Peters","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alison","family":"Wearden","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fiona","family":"Ulph","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2015,5,27]]},"reference":[{"key":"BFejhg2015104_CR1","doi-asserted-by":"publisher","first-page":"711","DOI":"10.1038\/ejhg.2009.25","volume":"17","author":"P Borry","year":"2009","unstructured":"Borry P, Evers-Kiebooms G, Cornel MC, Clarke A, Dierickx K : Genetic testing in asymptomatic minors: Background considerations towards ESHG Recommendations. Eur J Hum Genet 2009; 17: 711\u2013719.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR2","doi-asserted-by":"publisher","first-page":"234","DOI":"10.1038\/gim.2012.176","volume":"15","author":"LF Ross","year":"2013","unstructured":"Ross LF, Saal HM, David KL, Anderson RR : Technical report: ethical and policy issues in genetic testing and screening of children. Genet Med 2013; 15: 234\u2013245.","journal-title":"Genet Med"},{"key":"BFejhg2015104_CR3","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1038\/sj.ejhg.5201509","volume":"14","author":"P Borry","year":"2006","unstructured":"Borry P, Fryns JP, Schotsman P, Dierickx K : Carrier testing in minors: a systematic review of guidelines and position papers. Eur J Hum Genet 2006; 14: 133\u2013138.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR4","unstructured":"British Society for Human Genetics Report of a Working Party of the British Society for Human Genetics. Birmingham, UK: British Society for Human Genetics, 2010."},{"key":"BFejhg2015104_CR5","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1016\/j.amjmed.2008.12.020","volume":"122","author":"G Tsaras","year":"2009","unstructured":"Tsaras G, Owusu-Ansah A, Boateng FO, Amoateng-Adjepong Y : Complications associated with sickle cell trait: a brief narrative review. Am J Med 2009; 122: 507\u2013512.","journal-title":"Am J Med"},{"key":"BFejhg2015104_CR6","doi-asserted-by":"publisher","first-page":"303","DOI":"10.1038\/ejhg.2009.173","volume":"18","author":"FA Miller","year":"2010","unstructured":"Miller FA, Paynter M, Hayeems RZ et al: Understanding sickle cell carrier status identified through newborn screening: a qualitative study. Eur J Hum Genet 2010; 18: 303\u2013308.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR7","doi-asserted-by":"publisher","first-page":"484","DOI":"10.1038\/ejhg.2011.191","volume":"20","author":"LF Ross","year":"2012","unstructured":"Ross LF : Newborn screening for sickle cell disease: whose reproductive benefit? Eur J Hum Genet 2012; 20: 484\u2013485.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR8","unstructured":"NHS Screening Programmes. Information for mums and dads: Your baby carries a gene for sickle cell. Available at http:\/\/sct.screening.nhs.uk\/leaflets ."},{"key":"BFejhg2015104_CR9","doi-asserted-by":"publisher","first-page":"720","DOI":"10.1038\/ejhg.2009.25","volume":"17","author":"P Borry","year":"2009","unstructured":"Borry P, Cornel M, Evers-Kiebooms G et al: Genetic testing in asymptomatic minors: Recommendations of the European Society of Human Genetics. Eur J Hum Genet 2009; 17: 720\u2013721.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR10","first-page":"27","volume-title":"The Genetic Testing of Children","author":"P: Alderson","year":"1998","unstructured":"Alderson P: Talking to children\u2014and talking with them; in Clarke A (ed): The Genetic Testing of Children. Oxford, UK: BIOS Scientific Publishers Limited, 1998, pp 27\u201336."},{"key":"BFejhg2015104_CR11","doi-asserted-by":"publisher","first-page":"1090","DOI":"10.1038\/ejhg.2010.86","volume":"18","author":"F Ulph","year":"2010","unstructured":"Ulph F, Leong J, Glazebrook C, Townsend E : A qualitative study exploring genetic counsellors\u2019 experiences of counselling children. Eur J Hum Genet 2010; 18: 1090\u20131094.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR12","doi-asserted-by":"publisher","first-page":"173","DOI":"10.1007\/s10897-008-9201-0","volume":"18","author":"M Arribas-Ayllon","year":"2009","unstructured":"Arribas-Ayllon M, Sarangi S, Clarke A : Professional ambivalence: accounts of ethical practice in childhood genetic testing. J Genet Couns 2009; 18: 173\u2013184.","journal-title":"J Genet Couns"},{"key":"BFejhg2015104_CR13","doi-asserted-by":"publisher","first-page":"295","DOI":"10.1016\/S0277-9536(01)00029-6","volume":"54","author":"S Sarangi","year":"2002","unstructured":"Sarangi S, Clarke A : Constructing an account by contrast in counselling for childhood genetic testing. Soc Sci Med 2002; 54: 295\u2013308.","journal-title":"Soc Sci Med"},{"key":"BFejhg2015104_CR14","doi-asserted-by":"publisher","first-page":"380","DOI":"10.1038\/gim.2014.116","volume":"17","author":"DF Vears","year":"2014","unstructured":"Vears DF, Delany C, Gillam L : Carrier testing in children: exploration of genetic health professionals\u2019 practices in Australia. Genet Med 2014; 17: 380\u2013385.","journal-title":"Genet Med"},{"key":"BFejhg2015104_CR15","doi-asserted-by":"publisher","first-page":"317","DOI":"10.1097\/GIM.0b013e3181de695c","volume":"12","author":"CH Wade","year":"2010","unstructured":"Wade CH, Wilfond BS, McBride CM : Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature. Genet Med 2010; 12: 317\u2013326.","journal-title":"Genet Med"},{"key":"BFejhg2015104_CR16","doi-asserted-by":"crossref","unstructured":"British Medical Association Medical Ethics Today: The BMA\u2019s handbook of ethics and law, 3rd edn. West Sussex, UK: Wiley-Blackwell, 2012.","DOI":"10.1002\/9781444355666"},{"key":"BFejhg2015104_CR17","doi-asserted-by":"publisher","first-page":"785","DOI":"10.1136\/jmg.31.10.785","volume":"31","author":"A Clarke","year":"1994","unstructured":"Clarke A : The genetic testing of children\u2014working party of the Clinical Genetics Society (UK). J Med Genet 1994; 31: 785\u2013797.","journal-title":"J Med Genet"},{"key":"BFejhg2015104_CR18","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3310\/hta13570","volume":"13","author":"J Kai","year":"2009","unstructured":"Kai J, Ulph F, Cullinan T, Qureshi N : Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice. Health Technol Assess 2009; 13: 1\u201382.","journal-title":"Health Technol Assess"},{"key":"BFejhg2015104_CR19","doi-asserted-by":"publisher","first-page":"283","DOI":"10.1136\/adc.83.4.283","volume":"83","author":"A Fryer","year":"2000","unstructured":"Fryer A : Inappropriate genetic testing of children. Arch Dis Child 2000; 83: 283\u2013285.","journal-title":"Arch Dis Child"},{"key":"BFejhg2015104_CR20","doi-asserted-by":"publisher","first-page":"101","DOI":"10.1097\/GIM.0b013e3180306899","volume":"9","author":"TJ Multhaupt-Buell","year":"2007","unstructured":"Multhaupt-Buell TJ, Lovell A, Mills L, Stanford KE, Hopkin RJ : Genetic service providers' practices and attitudes regarding adolescent genetic testing for carrier status. Genet Med 2007; 9: 101\u2013107.","journal-title":"Genet Med"},{"key":"BFejhg2015104_CR21","doi-asserted-by":"publisher","first-page":"370","DOI":"10.1136\/jme.2007.021717","volume":"34","author":"P Borry","year":"2008","unstructured":"Borry P, Stultiens L, Goffin T, Nys H, Dierickx K : Minors and informed consent in carrier testing: a survey of European clinical geneticists. J Med Ethics 2008; 34: 370\u2013374.","journal-title":"J Med Ethics"},{"key":"BFejhg2015104_CR22","doi-asserted-by":"publisher","first-page":"459","DOI":"10.1038\/ejhg.2014.126","volume":"23","author":"F Ulph","year":"2014","unstructured":"Ulph F, Cullinan T, Qureshi N, Kai J : Parents\u2019 responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening. Eur J Hum Genet 2014; 23: 459\u2013465.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR23","doi-asserted-by":"publisher","first-page":"674","DOI":"10.1007\/s10897-013-9601-7","volume":"22","author":"C Tse","year":"2013","unstructured":"Tse C, Sahhar M, Wallace J, Duncan RE : \u2018There\u2019s a whole different way of working with adolescents\u2019: interviews with Australian Genetic Counselors about their experiences with adolescent clients. J Genet Counsel 2013; 22: 674\u2013684.","journal-title":"J Genet Counsel"},{"key":"BFejhg2015104_CR24","unstructured":"NHS Sickle Cell and Thalassaemia Screening Programme. Screening Programmes Sickle Cell and Thalassaemia Programme Review 2011\/2012. Available at www.sct.screening.nhs.uk ."},{"key":"BFejhg2015104_CR25","volume-title":"Transforming Qualitative Information: Thematic Analysis and Code Development","author":"RE Boyatzis","year":"1998","unstructured":"Boyatzis RE : Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage, 1998."},{"key":"BFejhg2015104_CR26","unstructured":"NHS Sickle Cell & Thalassaemia Screening Programmes. Combined list of high prevalence and low prevalence Trusts. Available at http:\/\/sct.screening.nhs.uk\/evaluationsreviewssurveys#fileid11806 ."},{"key":"BFejhg2015104_CR27","doi-asserted-by":"publisher","first-page":"1211","DOI":"10.1038\/sj.ejhg.5201909","volume":"15","author":"P Borry","year":"2007","unstructured":"Borry P, Goffin T, Nys H, Dierickx K : Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists. Eur J Hum Genet 2007; 15: 1211\u20131217.","journal-title":"Eur J Hum Genet"},{"key":"BFejhg2015104_CR28","doi-asserted-by":"publisher","first-page":"367","DOI":"10.1089\/gtmb.2008.0119","volume":"13","author":"AMC Plass","year":"2009","unstructured":"Plass AMC, Baars MJH, Cornel MC et al: Testing the Children: Do Non-Genetic Health-Care Providers Differ in Their Decision to Advise Genetic Presymptomatic Testing on Minors? A Cross-Sectional Study in Five Countries in the European Union. Genet Test Mol Biomarkers 2009; 13: 367\u2013376.","journal-title":"Genet Test Mol Biomarkers"},{"key":"BFejhg2015104_CR29","doi-asserted-by":"publisher","first-page":"1930","DOI":"10.1002\/ajmg.a.34107","volume":"155","author":"E Geelen","year":"2010","unstructured":"Geelen E, Hoyweghen IV, Doevendans PA, Marcelis CLM, Horstman K : Constructing \u2018best interests\u2019: Genetic testing of children in families with hypertrophic cardiomyopathy. Am J Med Genet 2010; 155: 1930\u20131938.","journal-title":"Am J Med Genet"},{"key":"BFejhg2015104_CR30","first-page":"01","volume":"29","author":"L Gillam","year":"2010","unstructured":"Gillam L : Children's bioethics and the zone of parental discretion. Monash Bioeth Rev 2010; 29: 01\u201303.","journal-title":"Monash Bioeth Rev"},{"key":"BFejhg2015104_CR31","first-page":"605","volume":"73","author":"MK Pelias","year":"2006","unstructured":"Pelias MK : Genetic testing of children for adult-onset diseases: is testing in the child\u2019s best interest? Mt Sinai J Med 2006; 73: 605\u2013608.","journal-title":"Mt Sinai J Med"},{"key":"BFejhg2015104_CR32","first-page":"97","volume-title":"The Genetic Testing of Children","author":"J: Gillot","year":"1998","unstructured":"Gillot J: Childhood testing for a carrier status: the perspective of the Genetic Interest Group; in Clarke A (ed): The Genetic Testing of Children. Oxford, UK: BIOS Scientific Publishers Limited, 1998, pp 97\u2013102."},{"key":"BFejhg2015104_CR33","doi-asserted-by":"crossref","unstructured":"British Medical Association Ethics Department Medical Ethics Today The BMA\u2019s Handbook of Ethics and Law, 3rd edn. West Sussex, UK: Wiley-Blackwell, 2012.","DOI":"10.1002\/9781444355666"},{"key":"BFejhg2015104_CR34","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1007\/s10689-009-9278-0","volume":"9","author":"A Fenwick","year":"2010","unstructured":"Fenwick A : Are guidelines for genetic testing of children necessary? Fam Cancer 2010; 9: 23\u201325.","journal-title":"Fam Cancer"},{"key":"BFejhg2015104_CR35","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1007\/s10689-009-9272-6","volume":"9","author":"M Parker","year":"2010","unstructured":"Parker M : Genetic testing in children and young people. Fam Cancer 2010; 9: 15\u201318.","journal-title":"Fam Cancer"},{"key":"BFejhg2015104_CR36","doi-asserted-by":"publisher","first-page":"92","DOI":"10.1046\/j.1369-6513.2001.00138.x","volume":"4","author":"AE Raffle","year":"2001","unstructured":"Raffle AE : Information about screening\u2014is it to achieve high uptake or to ensure informed choice? Health Expect 2001; 4: 92\u201398.","journal-title":"Health Expect"},{"key":"BFejhg2015104_CR37","doi-asserted-by":"publisher","first-page":"671","DOI":"10.1089\/gtmb.2010.0232","volume":"15","author":"F Vansenne","year":"2011","unstructured":"Vansenne F, de Borgie CA, Legdeur M, Spauwen MO, Peters M : Providing genetic risk information to parents of newborns with sickle cell trait: role of the general practitioner in neonatal screening. Genet Test Mol Biomarkers 2011; 15: 671\u2013675.","journal-title":"Genet Test Mol Biomarkers"},{"key":"BFejhg2015104_CR38","doi-asserted-by":"publisher","first-page":"640","DOI":"10.1038\/ejhg.2010.258","volume":"19","author":"A Metcalfe","year":"2011","unstructured":"Metcalfe A, Plumridge G, Coad J, Shanks A, Gill P : Parents\u2019 and children\u2019s communication about genetic risk: a qualitative study, learning from families\u2019 experiences. Eur J Hum Genet 2011; 19: 640\u2013646.","journal-title":"Eur J Hum Genet"}],"container-title":["European Journal of Human Genetics"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.nature.com\/articles\/ejhg2015104.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/www.nature.com\/articles\/ejhg2015104","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/www.nature.com\/articles\/ejhg2015104.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,5,18]],"date-time":"2023-05-18T17:13:44Z","timestamp":1684430024000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/ejhg2015104"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,5,27]]},"references-count":38,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2016,2]]}},"alternative-id":["BFejhg2015104"],"URL":"https:\/\/doi.org\/10.1038\/ejhg.2015.104","relation":{},"ISSN":["1018-4813","1476-5438"],"issn-type":[{"value":"1018-4813","type":"print"},{"value":"1476-5438","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,5,27]]},"assertion":[{"value":"25 September 2014","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 February 2015","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 April 2015","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 May 2015","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no conflict of interest.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}