A test of faith? Attitudes of ultraorthodox Jewish parents of children with down syndrome toward prenatal testing

References

• Amundson, Ron. 2005. “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics.” In Quality of Life and Human Difference. Genetic Testing, Health Care and Disability, edited by David Wasserman, Jerome Bickenbach, and Robert Wachbroit. Cambridge: Cambridge University Press. pp. 101–124.
   Google Scholar
• Asch, Adrienne. 2003. “Disability Equality and Prenatal Testing: Contradictory or Compatible.” Florida State University Law Review 30 (2): 315–342
   Google Scholar
• Burch, Leah. 2017. “A World without Down’s Syndrome? Online Resistance on Twitter:# Worldwithoutdowns and# Justaboutcoping.” Disability & Society 32 (7): 1085–1089.
   Web of Science ®Google Scholar
• Cahaner, Lee, and Gilad Malach. 2019. The Yearbook of Ultra-Orthodox Society in Israel 2019. Jerusalem: Israel Democracy Institute.
   Google Scholar
• Conrad, Peter, and Kristin K. Barker. 2010. “The Social Construction of Illness: Key Insights and Policy Implications.” Journal of Health and Social Behavior 51 (1_suppl): S67–S79. doi:10.1177/0022146510383495.
   PubMed Web of Science ®Google Scholar
• Denzin, Norman K., and Yvonna S. Lincoln. 1994. Handbook of Qualitative Research. Thousand Oaks: Sage.
   Google Scholar
• Ekstein, Josef, and Howard Katzenstein. 2001. “The Dor Yeshorim Story: Community-Based Carrier Screening for Tay-Sachs Disease.” Advances in Genetics 44: 297–310.
   PubMed Web of Science ®Google Scholar
• Frizell, Caroline. 2021. “Learning Disability Imagined Differently: An Evaluation of Interviews with Parents about Discovering That Their Child Has Down’s Syndrome.” Disability & Society, 36 (10): 1574–1593. doi: 10.1080/09687599.2020.1816904.
   Web of Science ®Google Scholar
• Garland-Thomson, Rosemarie. 2015. “Human Biodiversity Conservation: A Consensual Ethical Principle.” The American Journal of Bioethics 15 (6): 13–15. doi:10.1080/15265161.2015.1028663.
   PubMed Web of Science ®Google Scholar
• Groce, N. E., and I. K. Zola. 1993. “Multiculturalism, Chronic Illness, and Disability.” Pediatrics 91 (5 Pt 2): 1048–1055.
   PubMed Web of Science ®Google Scholar
• Gross, Sky E., and Judith T. Shuval. 2008. “On Knowing and Believing: Prenatal Genetic Screening and Resistance to ‘Risk-Medicine.” Health, Risk and Society 10 (6): 549–564. doi:10.1080/13698570802533721.
   Web of Science ®Google Scholar
• Hashiloni-Dolev, Yael. 2007. A Life (Un) Worthy of Living: Reproductive Genetics in Israel and Germany. Berlin: Springer-Kluwer
   Google Scholar
• Iezzoni, Lisa I. 2000. “Disability: The Reluctant Identity.” Journal of Health Politics, Policy and Law 25 (6): 1157–1167. doi:10.1215/03616878-25-6-1157.
   PubMed Web of Science ®Google Scholar
• Imhoff, Sarah. 2017. “Why Disability Studies Needs to Take Religion Seriously.” Religions 8 (9): 186. doi:10.3390/rel8090186.
   Web of Science ®Google Scholar
• Ivry, Tsipy, and Elly Teman. 2019. “Shouldering Moral Responsibility: The Division of Moral Labor among Pregnant Women, Rabbis, and Doctors.” American Anthropologist 121 (4): 857–869. doi:10.1111/aman.13314.
   Web of Science ®Google Scholar
• Ivry, Tsipy, Elly Teman, and Ayala Frumkin. 2011. “God-Sent Ordeals and Their Discontents: Ultra-Orthodox Jewish Women Negotiate Prenatal Testing.” Social Science & Medicine 72 (9): 1527–1533. http://www.elsevier.com/copyright. doi:10.1016/j.socscimed.201103.007.
   PubMed Web of Science ®Google Scholar
• Jarman, Michelle. 2015. “Relations of Abortion: Crip Approaches to Reproductive Justice.” Feminist Formations 27 (1): 46–66. doi:10.1353/ff.2015.0008.
   Google Scholar
• Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington: Indiana University Press.
   Google Scholar
• Kerr, Anne, and Tom Shakespeare. 2002. Genetic Politics: From Eugenics to Genome. Cheltenham: New Clarion Press.
   Google Scholar
• Kulik, Liat. 2016. “Explaining Employment Hardiness among Women in Israel’s Ultraorthodox Community: Facilitators and Inhibitors.” Journal of Career Assessment 24 (1): 67–85. doi:10.1177/1069072714565104.
   Web of Science ®Google Scholar
• Lalvani, Priya. 2011. “Constructing the (M)other: Dominant and Contested Narratives on Mothering a Child with Down Syndrome.” Narrative Inquiry 21 (2): 276–293. doi:10.1075/ni.21.2.06lal.
   Web of Science ®Google Scholar
• Lewis, C., C. Silcock, and L. S. Chitty. 2013. “Non-Invasive Prenatal Testing for Down’s Syndrome: Pregnant Women’s Views and Likely Uptake.” Public Health Genomics 16 (5): 223–232. doi:10.1159/000353523.
   PubMed Web of Science ®Google Scholar
• Lifshitz, Hefzibah, and Rivka Glaubman. 2004. “Caring for People with Disabilities in the Haredi Community: Adjustment Mechanism in Action.” Disability & Society 19 (5): 469–486. doi:10.1080/0968759042000235316.
   Web of Science ®Google Scholar
• Lopez, Jose. 2004. “How Sociology Can save Bioethics… Maybe.” Sociology of Health and Illness 26 (7): 875–896. doi:10.1111/j.0141-9889.2004.00421.x.
   PubMed Web of Science ®Google Scholar
• Mackie, F. L., K. Hemming, S. Allen, R. K. Morris, and M. D. Kilby. 2017. “The Accuracy of Cell-Free Fetal DNA-Based Non-Invasive Prenatal Testing in Singleton Pregnancies: A Systematic Review and Bivariate Meta-Analysis.” BJOG 124 (1): 32–46. doi:10.1111/1471-0528.14050.
   PubMed Web of Science ®Google Scholar
• Marx, Tzvi C. 2003. Disability in Jewish Law. London: Routledge.
   Google Scholar
• Nov-Klaiman, Tamar, Aviad E. Raz, and Yael. Hashiloni-Dolev. 2019. “Attitudes of Israeli Parents of Children with down Syndrome toward Non-Invasive Prenatal Screening and the Scope of Prenatal Testing.” Journal of Genetic Counseling 28 (6): 1119–1129. doi:10.1002/jgc4.1162.
   PubMed Web of Science ®Google Scholar
• Otieno, Pauline A. 2009. “Biblical and Theological Perspectives on Disability: Implications on the Rights of Persons with Disability in Kenya.” Disability Studies Quarterly 29 (4) https://dsq-sds.org/article/view/988/1164.
   Google Scholar
• Parens, Erik, and Adrienne. Asch. 2000. Prenatal Testing and Disability Rights. Washington, DC: Georgetown University Press.
   Google Scholar
• Paterson, Kevin, and Bill Hughes. 1999. “Disability Studies and Phenomenology: The Carnal Politics of Everyday Life.” Disability & Society 14 (5): 597–610. doi:10.1080/09687599925966.
   Web of Science ®Google Scholar
• Prainsack, Barbara, and Gil Siegal. 2006. “The Rise of Genetic Couplehood? A Comparative View of Premarital Genetic Testing.” BioSocieties 1 (1): 17–36. doi:10.1017/S1745855205050106.
   Google Scholar
• Raucher, Michal S. 2020. Conceiving Agency: Reproductive Authority among Haredi Women. Bloomington: Indiana University Press.
   Google Scholar
• Raz, Aviad E. 2009. “Eugenic Utopias/Dystopias, Reprogenetics, and Community Genetics.” Sociology of Health & Illness 31 (4): 602–616. doi:10.1111/j.1467-9566.2009.01160.x.
   PubMed Web of Science ®Google Scholar
• Raz, Aviad E., and Silke. Schicktanz. 2009a. “Diversity and Uniformity in Genetic Responsibility: Moral Attitudes of Patients, Relatives and Lay People in Germany and Israel.” Medicine, Health Care, and Philosophy 12 (4): 433–442. doi:10.1007/s11019-009-9215-x.
   PubMed Web of Science ®Google Scholar
• Raz, Aviad E., and Silke. Schicktanz. 2009b. “Lay Perceptions of Genetic Testing in Germany and Israel: The Interplay of National Culture and Individual Experience.” New Genetics and Society 28 (4): 401–414. doi:10.1080/14636770903314533.
   Web of Science ®Google Scholar
• Remennick, L. 2006. “The Quest for the Perfect Baby: Why Do Israeli Women Seek Prenatal Genetic Testing?” Sociology of Health & Illness 28 (1): 21–53.
   PubMed Web of Science ®Google Scholar
• Retief, Marno, and Rantoa Letšosa. 2018. “Models of Disability: A Brief Overview.” HTS Teologiese Studies/Theological Studies 74 (1). https://www.researchgate.net/publication/323608473_Models_of_disability_A_brief_overview
   Google Scholar
• Romano-Zelekha, Orly, and Tamy Shohat. 2011. “Use of Genetic Tests and Imaging for Prenatal Testing among Pregnant Women in Israel (in Hebrew).” Ministry of Health, Israel.
   Google Scholar
• Savulescu, Julian. 2001. “Procreative Beneficence: Why We Should Select the Best Children.” Bioethics 15 (5-6): 413–426. doi:10.1111/1467-8519.00251.
   PubMed Web of Science ®Google Scholar
• Saxton, Marsha. 2006. “Disability Rights and Selective Abortion.” The Disability Studies Reader 2: 105–116.
   Google Scholar
• Schendel, Rachèl v. van, Johanna H. Kleinveld, Wybo J. Dondorp, Eva Pajkrt, Danielle R. M. Timmermans, Kim C. A. Holtkamp, Margreet Karsten, Anne L. Vlietstra, Augusta M. A. Lachmeijer, and Lidewij Henneman. 2014. “Attitudes of Pregnant Women and Male Partners towards Non-Invasive Prenatal Testing and Widening the Scope of Prenatal Screening.” European Journal of Human Genetics 22 (12): 1345–1350. doi:10.1038/ejhg.2014.32.
   PubMed Web of Science ®Google Scholar
• Shakespeare, Tom, and Richard J. Hull. 2018. “Termination of Pregnancy after Non-Invasive Prenatal Testing (NIPT): Ethical Considerations.” Journal of Practical Ethics 6 (2): 32–54.
   Web of Science ®Google Scholar
• Silvers, Anita, David T. Wasserman, Mary Briody Mahowald, and Mary B. Mahowald. 1998. Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy. Vol. 94. Washington DC: Rowman & Littlefield.
   Google Scholar
• Strauss, A. C., and J. M. Corbin. 1990. Basics of Qualitative Research. Grounded Theory Procedures and Techniques. London: SAGE.
   Google Scholar
• Taragin-Zeller, Lea. 2017. “‘Have Six, Seven, or Even Eight Children’: On the Daily Encounters between Rabbinical Authority and Personal Freedom.” Judaism, Sovereignty and Human Rights 3: 113–138.
   Google Scholar
• Taragin-Zeller, Lea. 2019. “‘Conceiving God’s Children’: Toward a Flexible Model of Reproductive Decision-Making.” Medical Anthropology 38 (4): 370–383. doi:10.1080/01459740.2019.1570191.
   PubMed Web of Science ®Google Scholar
• Teman, Elly, Tsipy Ivry, and Barbara A. Bernhardt. 2011. “Pregnancy as a Proclamation of Faith: Ultra-Orthodox Jewish Women Navigating the Uncertainty of Pregnancy and Prenatal Diagnosis.” American Journal of Medical Genetics Part A 155 (1): 69–80. doi:10.1002/ajmg.a.33774.
   Web of Science ®Google Scholar
• Teman, Elly, Tsipy Ivry, and Heela Goren. 2016. “Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control.” Culture, Medicine and Psychiatry 40 (2): 268–288. doi:10.1007/s11013-016-9488-5.
   PubMed Web of Science ®Google Scholar
• Thomas, Gareth M., and Barbara Katz Rothman. 2016. “Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening.” AMA Journal of Ethics 18 (4): 406–415. doi:10.1001/journalofethics.2016.18.4.stas1-1604.
   PubMedGoogle Scholar
• Zlotogora, J., Z. Haklai, and A. Leventhal. 2007. “Utilization of Prenatal Diagnosis and Termination of Pregnancies for the Prevention of down Syndrome in Israel.” The Israel Medical Association Journal 9 (8): 600–602.
   PubMed Web of Science ®Google Scholar
• Zlotogora, Joël, Itamar Grotto, Ehud Kaliner, and Ronni Gamzu. 2016. “The Israeli National Population Program of Genetic Carrier Screening for Reproductive Purposes.” Genetics in Medicine 18 (2): 203–206. doi:10.1038/gim.2015.55.
   PubMed Web of Science ®Google Scholar