Vitalia Libman1, Michal Macarov2, Yechiel Friedlander1, Sidra Goldman-Mellor3, Salomon Israel4, Drorith Hochner-Celnikier5, Yishai Sompolinsky5, Uri Pinchas Dior5, Michael Osovsky6, Lina Basel-Salmon7,8,9,10, Arnon Wiznitzer10,11, Yehuda Neumark1, Vardiella Meiner2, Ayala Frumkin2, Shiri Shkedi-Rafid2, Hagit Hochner1. 1. Braun School of Public Health, Hebrew University of Jerusalem, Jerusalem, Israel. 2. Department of Genetics, Hadassah Medical Center, Jerusalem, Israel. 3. Department of Public Health, University of California Merced, Merced, California, USA. 4. Psychology Department, Hebrew University of Jerusalem, Jerusalem, Israel. 5. Department of Obstetrics and Gynecology, Hadassah Medical Organization and Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel. 6. Department of Neonatology, Rabin Medical Center, Beilinson Hospital, Petah Tikava, Israel. 7. The Raphael Recanati Genetics Institute, Tel Aviv, Israel. 8. Felsenstein Medical Research Center, Petah Tikava, Israel. 9. Pediatric Genetics Unit, Schneider Children Medical Center, Petah Tikva, Israel. 10. Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel. 11. The Helen Schneider Hospital for Women, Rabin Medical Center, Petah Tikva, Israel.
Abstract
BACKGROUND: Advanced prenatal genomic technologies can identify risks for adult-onset (AO) conditions in the fetus, challenging the traditional purpose of prenatal testing. Professional guidelines commonly support disclosure of high-penetrance AO actionable conditions, yet attitudes of women/parents to these findings and factors affecting their attitudes are understudied. METHODS: We explored 941 (77% response rate) postpartum women's attitudes towards receiving prenatal genetic information, and associations of sociodemographic, medical and psychological characteristics with their choices, focusing on AO conditions. RESULTS: Women largely support the disclosure of actionable AO findings (58.4%), in line with professional guidelines. A third of the women also supported the disclosure of non-actionable AO conditions. Stronger religious observance (p < 0.001) and higher psychological distress (p = 0.024) were associated with decreased interest in receiving actionable AO conditions, whereas higher concern for fetal health yielded increased interest (p = 0.032). Attitudes towards disclosure were strongly associated with women's perceived benefit of such information for their own, partner's, and future child's health. Termination of pregnancy based on such information received very little support. CONCLUSION: In-light of the demonstrated understanding of nuanced genetic information and the observed diversity in attitudes, a culturally competent opt-in/out policy could be considered. If full-disclosure is practiced, support should be provided to those expressing higher levels of distress.
BACKGROUND: Advanced prenatal genomic technologies can identify risks for adult-onset (AO) conditions in the fetus, challenging the traditional purpose of prenatal testing. Professional guidelines commonly support disclosure of high-penetrance AO actionable conditions, yet attitudes of women/parents to these findings and factors affecting their attitudes are understudied. METHODS: We explored 941 (77% response rate) postpartum women's attitudes towards receiving prenatal genetic information, and associations of sociodemographic, medical and psychological characteristics with their choices, focusing on AO conditions. RESULTS: Women largely support the disclosure of actionable AO findings (58.4%), in line with professional guidelines. A third of the women also supported the disclosure of non-actionable AO conditions. Stronger religious observance (p < 0.001) and higher psychological distress (p = 0.024) were associated with decreased interest in receiving actionable AO conditions, whereas higher concern for fetal health yielded increased interest (p = 0.032). Attitudes towards disclosure were strongly associated with women's perceived benefit of such information for their own, partner's, and future child's health. Termination of pregnancy based on such information received very little support. CONCLUSION: In-light of the demonstrated understanding of nuanced genetic information and the observed diversity in attitudes, a culturally competent opt-in/out policy could be considered. If full-disclosure is practiced, support should be provided to those expressing higher levels of distress.
Authors: S L van der Steen; K E M Diderich; S R Riedijk; J Verhagen-Visser; L C P Govaerts; M Joosten; M F C M Knapen; D Van Opstal; M I Srebniak; A Tibben; R J H Galjaard Journal: Clin Genet Date: 2014-10-28 Impact factor: 4.438
Authors: Jeffrey R Botkin; John W Belmont; Jonathan S Berg; Benjamin E Berkman; Yvonne Bombard; Ingrid A Holm; Howard P Levy; Kelly E Ormond; Howard M Saal; Nancy B Spinner; Benjamin S Wilfond; Joseph D McInerney Journal: Am J Hum Genet Date: 2015-07-02 Impact factor: 11.025
Authors: M I Srebniak; M Joosten; M F C M Knapen; L R Arends; M Polak; S van Veen; A T J I Go; D Van Opstal Journal: Ultrasound Obstet Gynecol Date: 2018-04 Impact factor: 7.299
Authors: Robert C Green; Jonathan S Berg; Wayne W Grody; Sarah S Kalia; Bruce R Korf; Christa L Martin; Amy L McGuire; Robert L Nussbaum; Julianne M O'Daniel; Kelly E Ormond; Heidi L Rehm; Michael S Watson; Marc S Williams; Leslie G Biesecker Journal: Genet Med Date: 2013-06-20 Impact factor: 8.822