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Published in: Journal of Genetic Counseling 5/2016

01-10-2016 | Original Research

NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result

Authors: Julie L. Piechan, Karrie A. Hines, Daniel L. Koller, Kristyne Stone, Kimberly Quaid, Wilfredo Torres-Martinez, Divya Wilson Mathews, Tatiana Foroud, Lola Cook

Published in: Journal of Genetic Counseling | Issue 5/2016

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Abstract

Since becoming clinically available in 2011, the use of noninvasive prenatal testing (NIPT) to screen for fetal aneuploidy has continued to increase. However, it has been questioned whether the education of patients undergoing NIPT consistently meets informed consent standards. We sought to evaluate patients’ basic understanding of NIPT, such as conditions assessed and accuracy. In addition, we investigated patient self-assessment of NIPT knowledge and satisfaction with the testing process. We distributed an anonymous paper survey to pregnant women during prenatal visits following a negative NIPT result. The survey assessed patient NIPT knowledge, gathered pregnancy-specific and demographic information, and allowed respondents to rank their basic understanding of NIPT and provide written feedback about the testing process. A total of 95 completed and 3 partially completed surveys were returned. Participants scored lowest on knowledge questions involving whether a negative NIPT result ensures a healthy baby or eliminates the possibility of Down syndrome. Most perceived themselves to have a good basic understanding of NIPT and two-thirds of the written feedback proposed no changes to NIPT administration. Overall, most patients appear satisfied with their understanding of NIPT and the testing process, yet they may not fully appreciate the limitations of this screening method.
Footnotes
1
NIPT is also referred to as noninvasive prenatal screening (NIPS) and cell-free fetal DNA testing for aneuploidy
 
2
Survey available upon request from the authors
 
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Metadata
Title
NIPT and Informed Consent: an Assessment of Patient Understanding of a Negative NIPT Result
Authors
Julie L. Piechan
Karrie A. Hines
Daniel L. Koller
Kristyne Stone
Kimberly Quaid
Wilfredo Torres-Martinez
Divya Wilson Mathews
Tatiana Foroud
Lola Cook
Publication date
01-10-2016
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 5/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-9945-x

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