Abstract
Women’s views on responsible motherhood influence decision-making regarding participation in prenatal screening. Previous studies showed that the probabilistic nature of the first-trimester combined test and the potential requirement for subsequent invasive diagnostics serve as legitimate reasons for women to exclude prenatal screening from their moral responsibilities. These moral barriers might now be less relevant with the introduction of the non-invasive prenatal test (NIPT) resulting in women feeling a moral duty to use NIPT screening as part of responsible motherhood. This qualitative study explores the impact of NIPT on women’s moral beliefs about the meaning of prenatal screening in relation to responsible motherhood. We performed semi-structured interviews with 29 pregnant women who were offered NIPT as a first-tier screening test within a Dutch nationwide study (TRIDENT-2). Results show that the inherent uncertainty about the fetus’s health despite improved accuracy and the lack of treatment for a detected disorder, combined with the possibility to obtain information about actionable anomalies through the fetal anomaly scan, support women’s perspectives that NIPT is not an obligation of responsible motherhood. Acceptance of NIPT is considered to be a free decision related to the information each woman needs to be a good mother for her child and her family. Women’s views may change when NIPT has expanded to include treatable or preventable conditions.
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Data availability
The interviews (datasets) generated during and/or analyzed during the current study are not publicly available due them containing information that could compromise research participant privacy/consent, but are available from the corresponding author on reasonable request.
References
Wilkinson S. Prenatal screening, reproductive choice, and public health. Bioethics. 2015;29:26–35.
Rothman BK. The tentative pregnancy: prenatal diagnosis and the future of motherhood. New York: Vikin; 1986.
Rapp R. Testing women, testing the fetus: the social impact of amniocentesis in America. New York: Routledge; 1999.
Tremain S. Reproductive freedom, self-regulation, and the government of impairment in utero. Hypatia: J Fem Philos. 2006;21:35–53.
Savulescu J. In defense of procreative beneficence. J Med Ethics. 2007;33:284–8.
Davis D. Genetic dilemmas: reproductive technologies parental choices, and children’s futures. New York: Oxford University Press; 2001.
Rapp R. Refusing prenatal diagnosis: the meanings of bioscience in a multicultural world. Sci Techol Human Values 1998;23:45–70.
Shakespeare T. Disability rights and wrongs. Routledge, Oxon, Great Britain, 2006.
Crombag NM, Boeije H, Iedema-Kuiper R, Schielen PCJI, Visser GHA, Bensing JM. Reasons for accepting or declining Down syndrome screening in Dutch prospective mothers within the context of national policy and healthcare system characteristics: a qualitative study. BMC Pregnancy Childbirth. 2016;16:121.
Carroll FE, Al-Janabi H, Flynn T, Montgomery AA. Women and their partners’ preferences for Down’s syndrome screening tests: a discrete choice experiment. Prenat Diagn. 2013;33:449–56.
van Bruggen J, Henneman L, Timmermans DRM. Women’s decision making regarding prenatal screening for fetal aneuploidy: a qualitative comparison between 2003 and 2016. Midwifery. 2018;64:93–100.
Garcia E, Timmermans DR, van Leeuwen E. Rethinking autonomy in the context of prenatal screening decision-making. Prenat Diagn. 2008;28:115–20.
Garcia E, Timmermans DR, van Leeuwen E. Parental duties and prenatal screening: does an offer of prenatal screening lead women to believe that they are morally compelled to test? Midwifery. 2012;28:e837–43.
Crombag NMTH, Vellinga YE, Kluijfhout SA, Bryant LD, Ward PA, Iedema-Kuiper R, et al. Explaining variation in Down’s syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews. BMC Health Serv Res. 2014;14:437.
Remennick L. The quest for the perfect baby: why do Israeli women seek prenatal genetic testing? Socio Health Illn. 2006;28:21–53.
Gil MM, Quezada MS, Revello R, Akolekar R, Nicolaides KH. Analysis of cell-free DNA in maternal blood in screening for fetal aneuploidies: updated meta-analysis. Ultrasound Obstet Gynecol. 2015;45:249–66.
Fairbrother G, Burigo J, Sharon T, Song K. Prenatal screening for fetal aneuploidies with cell-free DNA in the general pregnancy population: a cost-effectiveness analysis. J Matern Fetal Neonatal Med. 2016;29:1160–4.
Gekas J, Langlois S, Ravitsky V, Audibert F, van den Berg DG, Haidar H, et al. Non-invasive prenatal testing for fetal chromosome abnormalities: review of clinical and ethical issues. Appl Clin Genet. 2016;9:15–26.
Dondorp W, de Wert G, Bombard Y, Bianchi DW, Bergmann C, Borry P, et al. Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Eur J Hum Genet. 2015;23:1438–50.
Vanstone M, King C, de Vrijer B, Nisker J. Non-invasive prenatal testing: ethics and policy considerations. J Obstet Gynaecol Can. 2014;36:515–26.
Schmitz D, Netzer C, Henn W. An offer you can’t refuse? Ethical implications of non-invasive prenatal diagnosis. Nat Rev Genet. 2009;10:515.
Ravitsky V. The shifting landscape of prenatal testing: between reproductive autonomy and public health. Hastings Cent Rep. 2017;47:S34–40.
Ravitsky V. Non-invasive prenatal diagnosis: an ethical imperative. Nat Rev Genet. 2009;10:733.
Reinsch S, König A, Rehmann-Sutter C. Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany. New Gen Soc. 2021;40:199–215.
Farrell RM, Mercer MB, Agatisa PK, Smith MB, Philipson E. It’s more than a blood test: patients’ perspectives on noninvasive prenatal testing. J Clin Med. 2014;3:614–31.
Lewis C, Silcock C, Chitty L. Non-invasive prenatal testing for Down’s syndrome: pregnant women’s views and likely uptake. Public Health Genom. 2013;16:223–32.
Vanstone M, Cernat A, Nisker J, Schwartz L. Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions. BMC Med Ethics. 2018;19:27.
van Schendel RV, Page‐Christiaens GC, Beulen L, Bilardo CM, de Boer MA, Coumans ABC, et al. Trial by Dutch laboratories for evaluation of non‐invasive prenatal testing. Part II—women’s perspectives. Prenat Diagn. 2016;36:1091–8.
Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, et al. Is it better not to know certain things?: views of women who have undergone non-invasive prenatal testing on its possible future applications. J Med Ethics. 2019;45:231–8.
van Schendel RV, Kleinveld JH, Dondorp WJ, Pajkrt E, Timmermans DR, Holtkamp KC, et al. Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening. Eur J Hu Genet. 2014;22:1345–50.
van der Meij KRM, Sistermans EA, Macville MVA, Stevens SJC, Bax CJ, Bekker MN, et al. TRIDENT-2: national implementation of genome-wide non-invasive prenatal testing as a first-tier screening test in the Netherlands. Am J Hum Genet. 2019;5:1091–101.
van Schendel RV, van El CG, Pajkrt E, Henneman L, Cornel MC. Implementing non-invasive prenatal testing for aneuploidy in a national healthcare system: global challenges and national solutions. BMC Health Serv Res. 2017;17:670.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
de Jong A, de Wert GM. Prenatal screening: an ethical agenda for the near future. Bioethics. 2015;29:46–55.
Shakespeare T, Hull RJ. Termination of pregnancy after non-invasive prenatal testing (NIPT): ethical considerations. J Pr Ethics. 2018;6:32–54.
McDougall R. Parental virtue: a new way of thinking about the morality of reproductive actions. Bioethics. 2007;21:181–90.
Savulescu J. Abortion, infanticide and allowing babies to die, 40 years on. J Med Ethics. 2005;39:257–9.
Irving C, Richmond S, Wren C, Longster C, Embleton ND. Changes in fetal prevalence and outcome for trisomies 13 and 18: a population based study over 23 years. J Mater Fetal Neonatal Med. 2011;24:137–41.
Antonarakis SE, Lyle R, Dermitzakis ET, Reymond A, Deutsch S. Chromosome 21 and down syndrome: from genomics to pathophysiology. Nat Rev Genet. 2004;5:725–38.
Korenromp MJ, Page-Christiaens GCML, van den Bout J, Mulder EJH, Visser GHA. Maternal decision to terminate pregnancy in case of Down syndrome. Am J Obstet Gynecol. 2007;196:149.e1–11.
Lou S, Carstensen K, Petersen O, Palmhøj Nielsen C, Hvidman L, Retpen Lanther M, et al. Termination of pregnancy following a prenatal diagnosis of Down syndrome: a qualitative study of the decision-making process of pregnant couples. Acta Obstet Gynecol Scand. 2018;97:1228–36.
Skotko BG. With new prenatal testing, will babies with Down syndrome slowly disappear? Arch Dis Child. 2009;94:823–6.
de Graaf G, Buckley F, Skotko BG. Estimation of the number of people with Down syndrome in Europe. Eur J Hum Genet. 2021;29:402–10.
van El CG, Pieters T, Cornel M. Genetic screening and democracy: lessons from debating genetic screening criteria in the Netherlands. J Community Genet. 2012;3:79–89.
Bunnik EM, Kater-Kuipers A, Galjaard RJH, de Beaufort ID. Should pregnant women be charged for non-invasive prenatal screening? Implications for reproductive autonomy and equal access. J Med Ethics. 2020;46:194–8.
Dondorp WJ, Page-Christiaens GCM, de Wert GMWR. Genomic futures of prenatal screening: ethical reflection. Clin Genet. 2016;89:531–8.
Neufeld-Kaiser WA, Cheng EY, Liu YJ. Positive predictive value of non-invasive prenatal screening for foetal chromosome disorders using cell-free DNA in maternal serum: independent clinical experience of a tertiary referral center. BMC Med. 2015;13:129.
Gauthier C. Moral responsibility and respect for autonomy: Meeting the communitarian challenge. Kennedy Inst Ethics J. 2000;10:337–52.
Cernat A, De Freitas C, Majid U, Trivedi F, Higgins C, Vanstone M. Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences. BMC Pregnancy Childbirth. 2019;19:27.
Gitsels-van der Wal JT, Verhoeven PS, Manniën J, Martin L, Reinders HS, Spelten E, et al. Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy Childbirth. 2014;14:264.
Acknowledgements
We wish to thank all women and men who participated in this study. We thank the midwifery practices for their help with recruitment, and Elsbeth van Vliet-Lachotzki (VSOP Patient Alliance for Rare and Genetic Diseases) for her feedback on the interview guide and protocol. We thank all members of the Dutch NIPT Consortium (see Supplementary Appendix) for discussion and feedback on this study.
Funding
Supported by a grant from the Netherlands Organization for Health Research and Development (ZonMw, No. 543002001).
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LH, DRMT contributed to the design and implementation of the research, to the analysis of the results and to the writing of the manuscript. They supervised the findings of this work. EG (first author) contributed to the design and implementation of the research. She developed the interview guide, performed some of the interviews and analysed all the interviews together with IK. IK contributed to the development of the interview guide, performed some of the interviews and contributed to the analysis of the results. JTGvdW contributed to the developed of the interview guide and to the analysis of the results. LM and MNB contributed to the developed of the interview guide. All authors discussed the results, provided critical feedback and contributed to the final manuscript.
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Ethical approval for this interview study was obtained from the Medical Ethical Committee of the VU University Medical Center Amsterdam (no. 2017.165 (A2018.069)).
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Garcia, E., Henneman, L., Gitsels-van der Wal, J.T. et al. Non-invasive prenatal testing (NIPT) and pregnant women’s views on good motherhood: a qualitative study. Eur J Hum Genet 30, 669–675 (2022). https://doi.org/10.1038/s41431-021-00945-3
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DOI: https://doi.org/10.1038/s41431-021-00945-3
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