title: A survey of the SWISS researchers on the impact of sibling privacy protections on pedigree recruitment.
abstract: To understand the perceptions and attitudes about privacy safeguards in research and investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands.
authors.affiliation: Department of Neurology, University of Virginia, Charlottesville, VA, USA.
authors.forename: Bradford B
authors.initials: BB
authors.lastname: Worrall
authors.forename: Donna T
authors.initials: DT
authors.lastname: Chen
authors.forename: Robert D
authors.initials: RD
authors.lastname: Brown
authors.forename: Thomas G
authors.initials: TG
authors.lastname: Brott
authors.forename: James F
authors.initials: JF
authors.lastname: Meschia
mesh_terms: D001291:Attitude of Health Personnel; D002545:Brain Ischemia / Q000235:genetics; D002170:Canada; D030661:Genetic Privacy / Q000523:psychology*; D006801:Humans; D018579:Patient Selection; D010375:Pedigree; D012108:Research Personnel / Q000523:psychology*; D035781:Siblings; D020521:Stroke / Q000235:genetics; D014481:United States