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Journal of Genetic Counseling

, Volume 27, Issue 5, pp 1258–1264 | Cite as

Talking Points: Women’s Information Needs for Informed Decision-Making About Noninvasive Prenatal Testing for Down Syndrome

  • Aimée C. Dane
  • Madelyn Peterson
  • Yvette D. Miller
Original Research

Abstract

Adequate knowledge is a vital component of informed decision-making; however, we do not know what information women value when making decisions about noninvasive prenatal testing (NIPT). The current study aimed to identify women’s information needs for decision-making about NIPT as a first-tier, non-contingent test with out-of-pocket expense and, in turn, inform best practice by specifying the information that should be prioritized when providing pre-test counseling to women in a time-limited scenario or space-limited decision support tool. We asked women (N = 242) in Australia to indicate the importance of knowing 24 information items when making a decision about NIPT and to choose two information items they would most value. Our findings suggest that women value having complete information when making decisions about NIPT. Information about the accuracy of NIPT and the pros and cons of NIPT compared to other screening and invasive tests were perceived to be most important. The findings of this study can be used to maximize the usefulness of time-limited discussions or space-limited decision support tools, but should not be routinely relied upon as a replacement for provision of full and tailored information when feasible.

Keywords

Decision-making Prenatal screening Informed consent Down syndrome Noninvasive prenatal testing Noninvasive prenatal screening Cell-free fetal DNA cffDNA Patient education Patient knowledge 

Notes

Acknowledgements

We would like to thank the Queensland Centre for Mothers & Babies for facilitating recruitment through their newsletter, Facebook page, and consumer database.

This work was conducted to fulfill a degree requirement for the Masters of Science (with Honors in Genetic Counseling).

Compliance with Ethical Standards

Conflict of Interest

Aimée C. Dane, Madelyn Peterson, and Yvette D. Miller declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all individual participants included in this study.

This study was approved by the Griffith University Human Research Ethics Committee (protocol number BPS/19/12/HREC).

Animal Studies

No animal studies were carried out by the authors for this article.

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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  • Aimée C. Dane
    • 1
    • 2
  • Madelyn Peterson
    • 1
  • Yvette D. Miller
    • 3
  1. 1.School of Natural SciencesGriffith UniversityBrisbaneAustralia
  2. 2.Queensland Centre for Mothers & BabiesSt LuciaAustralia
  3. 3.School of Public Health and Social WorkQueensland University of TechnologyKelvin GroveAustralia

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