Attitudes toward prenatal genetic testing and therapeutic termination of pregnancy among parents of offspring with Prader-Willi syndrome |
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| Affiliation: | 1. Department of Internal Medicine, Hadassah Medical Center, Jerusalem, Israel;2. Seymour Fox School of Education, The Hebrew University of Jerusalem, Jerusalem, Israel;3. Reproductive Endocrinology and Genetics Unit, Department of Obstetrics and Gynecology, Shaare Zedek Medical Center, Jerusalem, Israel;4. Neuropediatric Unit, Department of Pediatrics, Shaare Zedek Medical Center, Jerusalem, Israel;5. Department of Pediatrics, Hadassah Medical Center, Jerusalem, Israel;1. Clinical Genetic Service, Department of Health, Hong Kong, China;2. Department of Paediatrics and Adolescent Medicine, Queen Mary Hospital, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong, China;3. Department of Obstetrics & Gynaecology, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong, China;4. Prenatal Diagnostic and Counseling Department, Tsan Yuk Hospital, Hong Kong, China;5. Department of Obstetrics & Gynaecology, Queen Mary Hospital, Hong Kong, China;6. Department of Obstetrics & Gynaecology, Tuen Mun Hospital, Hong Kong, China;1. University of South Carolina, Department of Psychology, Columbia, SC, United States;2. University of Houston, Department of Educational Psychology, Houston, TX, United States;3. Vanderbilt University, Department of Special Education, Nashville, TN, United States;1. Nephrology and Dialysis Unit, Department of Pediatrics, Azienda Ospedaliero Universitaria Sant’Orsola-Malpighi, Bologna, Italy;2. Department of Pediatrics, University of Parma, Parma, Italy;3. Department of Sciences for Health Promotion and Mother and Child Care, University of Palermo, Palermo, Italy;4. Pediatric Unit, Ospedale Mazzoni, Ascoli Piceno, Italy;5. Pediatric Unit, Ospedale S. Bortolo, Vicenza, Italy;6. Pediatric Unit, Ospedale Morgagni-Pierantoni, Forlì, Italy;7. Pediatric Unit, Ospedale degli Infermi, Rimini, Italy;8. Pediatric Unit, Ospedale di Faenza, Ravenna, Italy;9. Pediatric Nephrology and Dialysis Unit, Department of Clinical Sciences and Community Health, University of Milan, Fondazione IRCCS Cà Granda-Ospedale Maggiore Policlinico, Milan, Italy |
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| Abstract: | IntroductionPrenatal 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.ObjectiveTo explore factors influencing the attitudes of parents of PWS children toward PND and TOP concerning a hypothetical pregnancy with a PWS fetus.MethodsAll 85 parents of individuals with PWS were interviewed regarding their attitudes towards PND and TOP using semi-structured questionnaire.ResultsFifty-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.ConclusionsMost 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. |
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| Keywords: | Prader Willi syndrome Parents attitudes Prenatal diagnosis Termination of pregnancy Fetal anomalies |
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