title: Attitudes toward prenatal genetic testing and therapeutic termination of pregnancy among parents of offspring with Prader-Willi syndrome.
abstract: BACKGROUND
  Prenatal diagnosis (PND) raises ethical dilemmas such as the option of termination of pregnancy (TOP) in cases with severe outcome. Prader-Willi Syndrome (PWS), a complex neurogenetic syndrome with high morbidity and mortality throughout life. Recently, a unique prenatal phenotype was reported and TOP becomes a possibility.
  
  
  OBJECTIVE
  To explore factors influencing the attitudes of parents of PWS children toward PND and TOP concerning a hypothetical pregnancy with a PWS fetus.
  
  
  METHODS
  All 85 parents of individuals with PWS were interviewed regarding their attitudes towards PND and TOP using semi-structured questionnaire.
  
  
  RESULTS
  Fifty-seven parents were supportive of invasive PND and 28 of non-invasive tests only; none opposed PND. Thirty eight favored TOP, additional 31 supported TOP under certain conditions such as spiritual advice, 15 were categorically against TOP. Attitudes correlated with religiosity (p < 0.025), mother's education (p < 0.001), mother's work status (p < 0.001), current age of the child with PWS (p < 0.008). Couples had similar attitudes regarding PND and TOP. No correlation was found with gender, genetic subtype and parental age.
  
  
  CONCLUSIONS
  Most parents of individuals with PWS support PND, however less than half support TOP. Religiosity was the most influential factor. Familial worldview should be taken into account during prenatal counseling.
authors.affiliation: Department of Internal Medicine, Hadassah Medical Center, Jerusalem, Israel.
authors.forename: Noa
authors.initials: N
authors.lastname: Even-Zohar Gross
authors.affiliation: Seymour Fox School of Education, The Hebrew University of Jerusalem, Jerusalem, Israel; Reproductive Endocrinology and Genetics Unit, Department of Obstetrics and Gynecology, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Talia
authors.initials: T
authors.lastname: Geva-Eldar
authors.affiliation: Seymour Fox School of Education, The Hebrew University of Jerusalem, Jerusalem, Israel.
authors.forename: Yehuda
authors.initials: Y
authors.lastname: Pollak
authors.affiliation: Neuropediatric Unit, Department of Pediatrics, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Harry J
authors.initials: HJ
authors.lastname: Hirsch
authors.affiliation: Department of Pediatrics, Hadassah Medical Center, Jerusalem, Israel. Electronic address: itaigross@gmail.com.
authors.forename: Itai
authors.initials: I
authors.lastname: Gross
authors.affiliation: Seymour Fox School of Education, The Hebrew University of Jerusalem, Jerusalem, Israel; Neuropediatric Unit, Department of Pediatrics, Shaare Zedek Medical Center, Jerusalem, Israel.
authors.forename: Varda
authors.initials: V
authors.lastname: Gross-Tsur
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D005260:Female; D005820:Genetic Testing / Q000379:methods*; D006801:Humans; D007557:Israel; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010641:Phenotype; D011218:Prader-Willi Syndrome / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000379:methods*; D012067:Religion; D035781:Siblings; D012923:Social Class; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Fetal anomalies; Parents attitudes; Prader Willi syndrome; Prenatal diagnosis; Termination of pregnancy