Skip to main content
Log in

The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis

  • Original Research
  • Published:
Journal of Genetic Counseling


In order to provide the best genetic counseling possible for women who learn of a diagnosis of Down syndrome prenatally, we sought to assess the timing of the decision to continue a pregnancy and the satisfaction these women had with learning this information. Fifty-six mothers of children with Down syndrome diagnosed prenatally between 2007 and 2010 completed a survey regarding their experience with decision-making after prenatal diagnosis. Approximately one third (17/56) of participants reported they knew before getting pregnant that they would not terminate for any reason, and almost half of the participants (24/56) reported they did not decide to continue their pregnancy until after the diagnosis. Many participants (82 %; 42/56) stated that learning the diagnosis during pregnancy increased their anxiety. The majority (88 %; 45/56) also reported that if they could do it over again, they would undergo prenatal testing for preparation purposes, despite increased anxiety. Religious and spiritual beliefs as well as feeling attached to the baby were the personal factors that had the greatest impact on most women’s decision-making. Despite increased anxiety caused by learning the diagnosis prenatally, most women favored prenatal diagnosis as it allowed them time to process the information and prepare for the birth of their child.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others


  • Hawkins, A., Stenzel, A., Taylor, J., Chock, V., & Hudgins, L. (2012). Variables influencing pregnancy termination following prenatal diagnosis of fetal chromosome abnormalities. Journal of Genetic Counseling. doi:10.1007/s10897- 012-9539-1.

    Google Scholar 

  • Jones, J. M. (2004). Tracking religious affiliation, state by state. Gallup Poll. Retrieved from:

  • Kornman, L. H., Wortelboer, M. J. M., Beekhuis, J. R., Morssink, L. P., & Mantingh, A. (1997). Prenatal Diagnosis, 17(11), 1011–1018.

    Article  PubMed  CAS  Google Scholar 

  • Mansfield, C., Hopfer, S., & Marteau, T. M. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndrome: a systematic literature review. Prenatal Diagnosis, 19, 808–812.

    Article  PubMed  CAS  Google Scholar 

  • Natoli, J. L., Ackerman, D. L., McDermott, S., & Edwards, J. G. (2012). Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenatal Diagnosis, 32, 142–153.

    Article  PubMed  Google Scholar 

  • Schechtman, K. B., Gray, D. L., Baty, J. D., & Rothman, S. M. (2002). Decision-making for termination of pregnancies with fetal anomalies: analysis of 53,000 pregnancies. Obstetrics and Gynecology, 99(2), 216–222.

    Article  PubMed  Google Scholar 

  • Shaffer, B. L., Caughey, A. B., & Norton, M. E. (2006). Variation in the decision to terminate pregnancy in the setting of fetal aneuploidy. Prenatal Diagnosis, 26, 667–671.

    Article  PubMed  Google Scholar 

  • Sheets, K. B., Crissman, B. G., Feist, C. D., Sell, S. L., Johnson, L. R., Donahue, K. C., et al. (2011). Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling. doi:10.1007/s10897-011-9375-8.

    Google Scholar 

  • Skotko, B. (2005). Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers. American Journal of Obstetrics and Gynecology, 192, 670–677.

    Article  PubMed  Google Scholar 

  • U.S. Census Bureau (2010). USA Quickfacts. Retrieved from:

  • Verp, M. S., Bombard, A. T., Simpson, J. L., & Elias, S. (1988). Parental decision following prenatal diagnosis of fetal chromosome abnormality. American Journal of Medical Genetics, 29, 613–622.

    Article  PubMed  CAS  Google Scholar 

  • Zlotogora, J. (2002). Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenatal Diagnosis, 22, 1102–1106.

    Article  PubMed  Google Scholar 

Download references


We sincerely thank Kelly Ormond and Andrea Kwan for their thoughtful advice and suggestions. We thank Leah Slattery for helping with recruiting participants. We wish to acknowledge the National Society of Genetic Counselors’ Prenatal Special Interest Group for funding this study through their Grant Award.

Author information

Authors and Affiliations


Corresponding author

Correspondence to Emily Hurford.

Electronic supplementary material

Below is the link to the electronic supplementary material.


(DOCX 36 kb)

Rights and permissions

Reprints and permissions

About this article

Cite this article

Hurford, E., Hawkins, A., Hudgins, L. et al. The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis. J Genet Counsel 22, 587–593 (2013).

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: