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Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing

Abstract

Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. This study assesses how mothers of children with Down syndrome perceive NIPT, especially the impact they think it will have on their families and other families with children who have Down syndrome. Seventy-three self-reported mothers of children with Down syndrome responded to an anonymous online survey emailed to, and posted on, message boards of various Down syndrome support groups and networks. Data analysis included chi-square tests and thematic analysis. Fifty-nine percent of respondents indicated they would use NIPT in the future; respondents who had not used prenatal testing in the past were significantly less likely to report interest in using NIPT in the future than those who had prenatal testing previously (p < .001). Many respondents felt NIPT could lead to increased terminations (88 %), increased social stigma (57 %), and decreased availability of services for individuals with Down syndrome (64 %). However, only 16 % believed availability of new noninvasive tests would be the most important factor in determining the number of pregnancies with Down syndrome terminated in the future. Additionally, 48 % believed health care providers give biased or incorrect information about Down syndrome at the time of diagnosis, and 24 % felt this incorrect information leads to terminations of pregnancies affected with Down syndrome. Results suggest although mothers of children with Down syndrome believe new noninvasive testing will lead to an increase in termination of pregnancies with Down syndrome, they do not think it is the MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.

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Acknowledgments

We would like to thank the participants for their thoughtful contributions to this research, and Marcy Mamiya, who was invaluable in the identification and recruitment of study participants through the various Down syndrome networks. This research was supported by a grant from the Prenatal Special Interest Group of the National Society of Genetic Counselors.

Disclosure of interest

The authors declare no conflict of interest. The authors have full control of the primary data, and they agree to allow the journal to review their data if requested.

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Correspondence to Kelly Ormond.

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Kellogg, G., Slattery, L., Hudgins, L. et al. Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing. J Genet Counsel 23, 805–813 (2014). https://doi.org/10.1007/s10897-014-9694-7

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  • DOI: https://doi.org/10.1007/s10897-014-9694-7

Keywords

  • Noninvasive prenatal testing (NIPT)
  • Down syndrome
  • Stakeholder views
  • Parent perceptions
  • Information provision