title: Compliance for genetic screening in the Arab population in Israel.
abstract: BACKGROUND
  Genetic screening tests for cystic fibrosis (CF), fragile X (FRAX) and spinal muscular atrophy (SMA) have been offered to the entire Arab population of Israel in the last few years. Since 2008, screening for CF is provided free of charge, but for FRAX and SMA the screening is privately funded with partial coverage by complementary health insurance programs.
  
  
  OBJECTIVE
  To assess the compliance of Arab couples with regard to genetic screening tests, and the factors that affect their decisions.
  
  
  METHODS
  We analyzed compliance for genetic screening tests at the Emek Medical Center Genetic Institute, and in outreach clinics in four Arab villages. We enquired about the reasons individuals gave for deciding not to undergo testing. We also assessed the compliance of these individuals for the triple test (a screening test for Down syndrome).
  
  
  RESULTS
  Of the 167 individuals included in our study, 24 (14%) decided not to be tested at all. Of the 143 (86%) who decided to be tested, 109 were tested for CF only (65%) and 34 (20%) for SMA and FRAX (as well as CF). The compliance rate for the triple test was 87%. Technical reasons, mainly financial issues, were the most significant factor for not undergoing all three tests.
  
  
  CONCLUSIONS
  The compliance of the Arab community for genetic testing for SMA and FRAX is extremely low. We believe that this low utilization of screening is due to economic reasons, especiallywhen a complementary health plan has not been acquired, and largely reflects the perception that these tests are less important since they are privately funded.
authors.affiliation: Genetics Institute, Emek Medical Center, Afula, Israel. riki.sukenik@gmail.com
authors.forename: Rivka
authors.initials: R
authors.lastname: Sukenik-Halevy
authors.forename: Ulfat Abu
authors.initials: UA
authors.lastname: Leil-Zoabi
authors.forename: Lilach
authors.initials: L
authors.lastname: Peled-Perez
authors.forename: Joel
authors.initials: J
authors.lastname: Zlotogora
authors.forename: Stavit
authors.initials: S
authors.lastname: Allon-Shalev
mesh_terms: D000328:Adult; D018912:Arabs / Q000235:genetics*; D003550:Cystic Fibrosis / Q000235:genetics*; D003657:Decision Making; D004314:Down Syndrome / Q000235:genetics*; D005260:Female; D005600:Fragile X Syndrome / Q000235:genetics*; D005820:Genetic Testing / Q000191:economics* / Q000706:statistics & numerical data*; D006801:Humans; D007557:Israel; D008297:Male; D009134:Muscular Atrophy, Spinal / Q000235:genetics*; D010349:Patient Compliance; D011247:Pregnancy