title: Population screening for BRCA1/BRCA2 mutations: lessons from qualitative analysis of the screening experience.
abstract: Population screening for BRCA1/BRCA2. mutations is being considered for Ashkenazi Jews (AJ) because 2.5% carry recurrent deleterious mutations and effective cancer prevention exists. This study aimed to provide a qualitative focus on perspectives of individuals, particularly carriers, who were tested through a screening trial. In this trial, the pretest process included only written information.
  
  
  
  Interviews were performed with 26 carriers and 10 noncarriers who participated in a BRCA population screening trial for AJ.
  
  
  
  Attitudes toward screening were generally positive. The main motivator for testing was knowledge of BRCA status to enable cancer risk reduction. Knowledge of carrier status, although challenging, was thus viewed as health-empowering. The screening paradigm was sensed as increasing awareness and as overcoming access, referral, and familial barriers. Streamlining the pretest process was positively perceived as offering gradual, stepwise knowledge commensurate with test results. Participants were concerned that health systems provide the necessary conceptual and infrastructural framework and that individual autonomy be maintained.
  
  
  
  BRCA screening in AJ is viewed favorably, even by carriers. Stepwise acquisition of knowledge based on test results was viewed as most relevant to the screening context. Screening program development should account for safeguarding autonomy and providing requisite post-test services.Genet Med advance online publication 01 December 2016.
authors.affiliation: Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.|Medical Genetics Institute, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Sari
authors.identifier: 0000-0003-1671-6444
authors.initials: S
authors.lastname: Lieberman
authors.affiliation: Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.|Department of Family Medicine, Clalit Health Services, Jerusalem, Israel.
authors.forename: Amnon
authors.initials: A
authors.lastname: Lahad
authors.affiliation: Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.|Medical Genetics Institute, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Ariela
authors.identifier: 0000-0003-1756-5801
authors.initials: A
authors.lastname: Tomer
authors.affiliation: Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.|Medical Genetics Institute, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Carmit
authors.initials: C
authors.lastname: Cohen
authors.affiliation: Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.|Medical Genetics Institute, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Ephrat
authors.initials: E
authors.lastname: Levy-Lahad
authors.affiliation: Department of Sociology and Anthropology, Ben-Gurion University of the Negev, Beer Sheva, Israel.
authors.forename: Aviad
authors.initials: A
authors.lastname: Raz
mesh_terms: D001294:Attitude to Health; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D005260:Female; D006580:Genetic Carrier Screening; D006801:Humans; D007585:Jews / Q000235:genetics* / Q000523:psychology; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D009154:Mutation; D036301:Qualitative Research
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human