title: Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer.
abstract: OBJECTIVE
  Little is known about reasons why eligible breast cancer patients decline BRCA mutation testing. They may withdraw at different stages during genetic counseling for different reasons. We prospectively studied perceived benefits and barriers to genetic counseling and BRCA testing in 102 newly diagnosed breast cancer patients approached for genetic counseling at the start of radiotherapy.
  
  
  METHODS
  Patients completed questionnaires and participated in interviews at different stages of the counseling protocol.
  
  
  RESULTS
  Participation was not influenced by distress, knowledge about hereditary breast cancer, previous genetic testing in relatives, or perceived risks and barriers. Immediate decliners (n = 23) do not believe genetic testing is relevant for them. Patients who decline after pedigree compilation (n = 14) are more hesitant and anxious about the influence of the test result on their future often wishing to postpone further testing. Late decliners (n = 7) withdraw afraid of the test result and/or after a relative's objection. These decliners are not easily identified upon approach because they are similar to patients who receive a DNA test result (n = 58). Notwithstanding their decline, 81% agreed to the timing or would have preferred an earlier approach for genetic counseling.
  
  
  CONCLUSIONS
  Decliners may make more informed decisions after tailored health education, including adequate risk information.
authors.affiliation: Department of Medical Oncology, University Medical Center, Utrecht, the Netherlands. K.J.Schlich@umcutrecht.nl
authors.forename: Kathryn J
authors.initials: KJ
authors.lastname: Schlich-Bakker
authors.forename: Herman F J
authors.initials: HF
authors.lastname: ten Kroode
authors.forename: Carla C
authors.initials: CC
authors.lastname: Wárlám-Rodenhuis
authors.forename: Jan
authors.initials: J
authors.lastname: van den Bout
authors.forename: Margreet G E M
authors.initials: MG
authors.lastname: Ausems
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000235:genetics* / Q000628:therapy*; D003376:Counseling; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D011795:Surveys and Questionnaires