Voluntary disclosure of BRCA1 mutation test results.
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.
Smith
Ken R
KR
Department of Family and Consumer Studies, University of Utah, Salt Lake City, UT 84112, USA. ken.smith@fc.utah.edu
Zick
Cathleen D
CD
Mayer
Robert N
RN
Botkin
Jeffery R
JR
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