title: Voluntary disclosure of BRCA1 mutation test results.
abstract: This study assessed the probability that individuals tested for a BRCA1 gene mutation share their test results with family members, co-workers, and insurers. Members of a large kindred known to be at-risk for carrying a BRCA1 gene mutation were tested and they learned their results from a genetic counselor. During a follow-up interview, 4 months later, subjects were asked with whom they had shared their results. Respondents were most likely to have communicated results to family members, followed by co-workers, and insurers. Carrier status affected their willingness to disclose results to insurers. High rates of disclosure to family members should promote awareness of hereditary cancer risk. Selective disclosure to co-workers and insurers may promote information asymmetries that could affect employment and insurance markets.
authors.affiliation: Department of Family and Consumer Studies, University of Utah, Salt Lake City, UT 84112, USA. ken.smith@fc.utah.edu
authors.forename: Ken R
authors.initials: KR
authors.lastname: Smith
authors.forename: Cathleen D
authors.initials: CD
authors.lastname: Zick
authors.forename: Robert N
authors.initials: RN
authors.lastname: Mayer
authors.forename: Jeffery R
authors.initials: JR
authors.lastname: Botkin
mesh_terms: D000328:Adult; D003365:Costs and Cost Analysis; D005190:Family; D005260:Female; D019398:Genes, BRCA1; D005817:Genetic Counseling; D006801:Humans; D007348:Insurance, Health / Q000191:economics; D007352:Insurance, Life / Q000191:economics; D008297:Male; D009154:Mutation; D009679:Nuclear Family; D011336:Probability; D014342:Truth Disclosure