{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T15:40:36Z","timestamp":1785512436497,"version":"3.56.0"},"reference-count":40,"publisher":"MDPI AG","issue":"24","license":[{"start":{"date-parts":[[2021,12,13]],"date-time":"2021-12-13T00:00:00Z","timestamp":1639353600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100015726","name":"Oncology Nursing Foundation","doi-asserted-by":"publisher","award":["2007 Major Breast Cancer Research Award"],"award-info":[{"award-number":["2007 Major Breast Cancer Research Award"]}],"id":[{"id":"10.13039\/100015726","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","award":["5U48DP001901-03"],"award-info":[{"award-number":["5U48DP001901-03"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Robert Wood Johnson Foundation, 2010 Nurse Faculty Scholars Award","award":["68039"],"award-info":[{"award-number":["68039"]}]},{"DOI":"10.13039\/501100004361","name":"Swiss Cancer League","doi-asserted-by":"publisher","award":["KLS-4294-08-2017"],"award-info":[{"award-number":["KLS-4294-08-2017"]}],"id":[{"id":"10.13039\/501100004361","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100013362","name":"Swiss Cancer Research Foundation","doi-asserted-by":"publisher","award":["KFS-5293-02-2021"],"award-info":[{"award-number":["KFS-5293-02-2021"]}],"id":[{"id":"10.13039\/501100013362","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Examining genetic literacy in families concerned with hereditary breast and ovarian cancer (HBOC) helps understand how genetic information is passed on from individuals who had genetic counseling to their at-risk relatives. This cross-study comparison explored genetic literacy both at the individual and the family level using data collected from three sequential studies conducted in the U.S. and Switzerland over \u226510 years. Participants were primarily females, at-risk or confirmed carriers of HBOC-associated pathogenic variants, who had genetic counselling, and \u22651 of their relatives who did not. Fifteen items assessed genetic literacy. Among 1933 individuals from 518 families, 38.5% had genetic counselling and 61.5% did not. Although genetic literacy was higher among participants who had counselling, some risk factors were poorly understood. At the individual level, genetic literacy was associated with having counselling, \u22645 years ago, higher education, and family history of cancer. At the family level, genetic literacy was associated with having counselling, higher education, and a cancer diagnosis. The findings suggest that specific genetic information should be emphasized during consultations, and that at-risk relatives feel less informed about inherited cancer risk, even if information is shared within families. There is a need to increase access to genetic information among at-risk individuals.<\/jats:p>","DOI":"10.3390\/cancers13246254","type":"journal-article","created":{"date-parts":[[2021,12,14]],"date-time":"2021-12-14T01:20:41Z","timestamp":1639444841000},"page":"6254","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years"],"prefix":"10.3390","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5059-3866","authenticated-orcid":false,"given":"Carla","family":"Pedrazzani","sequence":"first","affiliation":[{"name":"Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2817-3865","authenticated-orcid":false,"given":"Chang","family":"Ming","sequence":"additional","affiliation":[{"name":"Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2625-7619","authenticated-orcid":false,"given":"Nicole","family":"B\u00fcrki","sequence":"additional","affiliation":[{"name":"Women\u2019s Clinic, University Hospital Basel, 4031 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4197-8913","authenticated-orcid":false,"given":"Maria","family":"Caiata-Zufferey","sequence":"additional","affiliation":[{"name":"Department of Business Economics, Health and Social Care, University of Applied Science and Arts of Southern Switzerland, 6928 Manno, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3464-9241","authenticated-orcid":false,"given":"Pierre O.","family":"Chappuis","sequence":"additional","affiliation":[{"name":"Oncogenetics Unit, Service of Oncology, University Hospital of Geneva, 1205 Geneva, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Debra","family":"Duquette","sequence":"additional","affiliation":[{"name":"Feinberg School of Medicine, Northwestern University, Chicago, IL 60208, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7577-0523","authenticated-orcid":false,"given":"Karl","family":"Heinimann","sequence":"additional","affiliation":[{"name":"Medical Genetics, University Hospital Basel, 4031 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Viola","family":"Heinzelmann-Schwarz","sequence":"additional","affiliation":[{"name":"Women\u2019s Clinic, University Hospital Basel, 4031 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rossella","family":"Graffeo-Galbiati","sequence":"additional","affiliation":[{"name":"Oncology Institute of Southern Switzerland, 6900 Lugano, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6823-7130","authenticated-orcid":false,"given":"Sofia D.","family":"Merajver","sequence":"additional","affiliation":[{"name":"University of Michigan School of Public Health, Ann Arbor, MI 48109, USA"},{"name":"Roger Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI 48109, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kara J.","family":"Milliron","sequence":"additional","affiliation":[{"name":"Roger Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI 48109, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Monnerat","sequence":"additional","affiliation":[{"name":"Jura Hospital, 2800 Del\u00e9mont, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivia","family":"Pagani","sequence":"additional","affiliation":[{"name":"Oncology Institute of Southern Switzerland, 6900 Lugano, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6764-1844","authenticated-orcid":false,"given":"Manuela","family":"Rabaglio","sequence":"additional","affiliation":[{"name":"Inselspital University Hospital, 3010 Bern, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3903-3750","authenticated-orcid":false,"given":"Maria C.","family":"Katapodi","sequence":"additional","affiliation":[{"name":"Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,12,13]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"658","DOI":"10.1038\/gim.2013.14","article-title":"What does it mean to be genomically literate?: National Human Genome Research Institute Meeting Report","volume":"15","author":"Hurle","year":"2013","journal-title":"Genet. 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