{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,20]],"date-time":"2026-10-20T17:27:34Z","timestamp":1792517254797,"version":"4.5.0"},"reference-count":30,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2018,3,19]],"date-time":"2018-03-19T00:00:00Z","timestamp":1521417600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2018,3,19]],"date-time":"2018-03-19T00:00:00Z","timestamp":1521417600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000770","name":"University of Manchester","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100000770","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2018,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>When a boy is diagnosed with an X\u2010linked condition such as Duchenne or Becker muscular dystrophy (D\/BMD), the mother learns not only of her own potential carrier risk but also that of her daughters. Before the daughters are seen in the Genetics Clinic, responsibility for disclosing carrier risk information falls mainly to their mothers. We know little about if when and how these daughters are being told about their risk, and how mothers find the experience. Should we be doing more to help and support them? Using qualitative methods, six mothers known to the Manchester Centre for Genomic Medicine were interviewed about the disclosure of D\/BMD carrier risk information to their daughters. The four key themes that arose are presented: communication process, facilitators of disclosure, barriers to disclosure and support and information. Despite the participants\u2019 endeavours to be open and honest with their daughters and their belief that they had fully disclosed, key information was often withheld. Major barriers to discussion of the future, including reproductive options, were apparent. These were partly overcome by the involvement of genetic counsellors (GCs). The participants suggested a greater involvement of GCs, proactively sending appointments and written information, and offering carrier testing more flexibly.<\/jats:p>","DOI":"10.1007\/s10897-018-0251-7","type":"journal-article","created":{"date-parts":[[2018,3,19]],"date-time":"2018-03-19T07:05:46Z","timestamp":1521443146000},"page":"1265-1274","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["The Process of Disclosure: Mothers\u2019 Experiences of Communicating X\u2010Linked Carrier Risk Information to At\u2010Risk Daughters"],"prefix":"10.1002","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1218-4148","authenticated-orcid":false,"given":"Amy","family":"Goldman","sequence":"first","affiliation":[{"name":"Division of Evolution and Genomic Sciences, School of Biological Sciences University of Manchester Manchester UK"},{"name":"Manchester Centre for Genomic Medicine, St Mary's Hospital, Manchester University NHS Foundation Trust Manchester Academic Health Sciences Centre 6th Floor, Oxford Road Manchester M13 9WL UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alison","family":"Metcalfe","sequence":"additional","affiliation":[{"name":"Faculty of Health and Well\u2010being Sheffield Hallam University Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rhona","family":"MacLeod","sequence":"additional","affiliation":[{"name":"Division of Evolution and Genomic Sciences, School of Biological Sciences University of Manchester Manchester UK"},{"name":"Manchester Centre for Genomic Medicine, St Mary's Hospital, Manchester University NHS Foundation Trust Manchester Academic Health Sciences Centre 6th Floor, Oxford Road Manchester M13 9WL UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,3,19]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201509"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_12_4_1","first-page":"1","volume-title":"Genetic testing of children","author":"British Society for Human Genetics.","year":"2010"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(02)07815-7"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/14768320701235249"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/1096-8628(20010101)98:1<57::AID-AJMG1007>3.0.CO;2-J"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2009.02.049"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2008.104"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201883"},{"key":"e_1_2_12_11_1","unstructured":"Gillick v West Norfolk and Wisbech Area Health Authority(1985). 3 All ER 402 (HL)."},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0960-8966(00)00185-1"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF02982403"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.101"},{"key":"e_1_2_12_15_1","volume-title":"Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information","author":"Joint Committee on Medical Genetics.","year":"2011"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105302007002456"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105311417193"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-009-9215-2"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-010-9326-9"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2008.84"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2010.258"},{"key":"e_1_2_12_22_1","volume-title":"Qualitative data analysis: an expanded source book","author":"Miles M.","year":"1994"},{"key":"e_1_2_12_23_1","first-page":"51","volume-title":"Qualitative psychology: a practical guide to research methods","author":"Osborn M.","year":"2008"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33364"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-011-9361-1"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1996.03530410049032"},{"key":"e_1_2_12_27_1","doi-asserted-by":"crossref","unstructured":"Poysky J.&Kinnett K.(2009)Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy: April 24\u201325 2008 Miami Florida.Neuromuscular Disorders (19) 733\u2013738.","DOI":"10.1016\/j.nmd.2009.07.011"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2012.09.002"},{"key":"e_1_2_12_29_1","first-page":"227","volume-title":"Family communication about genetics: theory and practice","author":"Sullivan J.","year":"2010"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e318221ad14"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1159\/000080300"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s10897-018-0251-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s10897-018-0251-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s10897-018-0251-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1007\/s10897-018-0251-7","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T12:38:14Z","timestamp":1694781494000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1007\/s10897-018-0251-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,3,19]]},"references-count":30,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2018,10]]}},"alternative-id":["10.1007\/s10897-018-0251-7"],"URL":"https:\/\/doi.org\/10.1007\/s10897-018-0251-7","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,3,19]]}}}