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Patients and their families likely experience obstacles in obtaining sufficient health information given their disorders\u2019 rarity. To investigate this possibility, we examined information\u2010seeking behaviors and levels of general and disorder\u2010specific genetic knowledge among 315 members of 174 families with an IBMFS, and how information\u2010seeking behaviors and socio\u2010demographic factors may be associated with their genetic knowledge. Cross\u2010sectional survey data indicated that participants were most likely to have ever used the Internet or healthcare providers for genetic information. On average, participants correctly answered 57 % of items assessing general genetic knowledge and 49\u201359 % of disorder\u2010specific knowledge items. Greater knowledge was associated with greater education and ever experiencing genetic counseling, attending a scientific meeting, and seeking information from the Internet and scientific literature. Among families with Fanconi anemia (whose family support organization has the longest history of providing information), greater disorder\u2010specific genetic knowledge was also associated with seeking information from support groups and other affected families. Results suggest that families with IBMFS have uncertainty regarding genetic aspects of their disorder, and highlight potential channels for delivering educational resources.<\/jats:p>","DOI":"10.1007\/s10897-014-9807-3","type":"journal-article","created":{"date-parts":[[2014,12,26]],"date-time":"2014-12-26T01:53:34Z","timestamp":1419558814000},"page":"760-770","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Genetic Information\u2010Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes"],"prefix":"10.1002","volume":"24","author":[{"given":"Jada G.","family":"Hamilton","sequence":"first","affiliation":[{"name":"Department of Psychiatry &amp; Behavioral Sciences Memorial Sloan Kettering Cancer Center 641 Lexington Avenue, 7th floor New York NY 10022 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sadie P.","family":"Hutson","sequence":"additional","affiliation":[{"name":"College of Nursing University of Tennessee\u2010Knoxville Knoxville TN USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy E.","family":"Frohnmayer","sequence":"additional","affiliation":[{"name":"Clinical Mental Health Counseling Program Oregon State University \u2013 Cascades Bend OR USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul K. 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