Risk and uncertainty: Shifting decision making for aneuploidy screening to the first trimester of pregnancy

Ruth M. Farrell, Natasha Dolgin, Sue Flocke, Victoria Winbush, Mary Beth Mercer, Christian Simon

Research output: Contribution to journalArticle

19 Citations (Scopus)

Abstract

PURPOSE: The clinical introduction of first trimester aneuploidy screening uniquely challenges the informed consent process for both patients and providers. This study investigated key aspects of the decision-making process for this new form of prenatal genetic screening. METHODS: Qualitative data were collected by nine focus groups that comprised women of different reproductive histories (N = 46 participants). Discussions explored themes regarding patient decision making for first trimester aneuploidy screening. Sessions were audio recorded, transcribed, coded, and analyzed to identify themes. RESULTS: Multiple levels of uncertainty characterize the decision-making process for first trimester aneuploidy screening. Baseline levels of uncertainty existed for participants in the context of an early pregnancy and the debate about the benefit of fetal genetic testing in general. Additional sources of uncertainty during the decision-making process were generated from weighing the advantages and disadvantages of initiating screening in the first trimester as opposed to waiting until the second. Questions of the quality and quantity of information and the perceived benefit of earlier access to fetal information were leading themes. Barriers to access prenatal care in early pregnancy presented participants with additional concerns about the ability to make informed decisions about prenatal genetic testing. CONCLUSIONS: The option of the first trimester aneuploidy screening test in early pregnancy generates decision-making uncertainty that can interfere with the informed consent process. Mechanisms must be developed to facilitate informed decision making for this new form of prenatal genetic screening.

Original languageEnglish (US)
Pages (from-to)429-436
Number of pages8
JournalGenetics in Medicine
Volume13
Issue number5
DOIs
StatePublished - May 1 2011
Externally publishedYes

Fingerprint

Aneuploidy
First Pregnancy Trimester
Uncertainty
Decision Making
Genetic Testing
Informed Consent
Prenatal Diagnosis
Pregnancy
Reproductive History
Access to Information
Aptitude
Prenatal Care
Focus Groups

Keywords

  • decision-making
  • informed consent
  • prenatal genetic screening
  • uncertainty

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Risk and uncertainty : Shifting decision making for aneuploidy screening to the first trimester of pregnancy. / Farrell, Ruth M.; Dolgin, Natasha; Flocke, Sue; Winbush, Victoria; Mercer, Mary Beth; Simon, Christian.

In: Genetics in Medicine, Vol. 13, No. 5, 01.05.2011, p. 429-436.

Research output: Contribution to journalArticle

Farrell, Ruth M. ; Dolgin, Natasha ; Flocke, Sue ; Winbush, Victoria ; Mercer, Mary Beth ; Simon, Christian. / Risk and uncertainty : Shifting decision making for aneuploidy screening to the first trimester of pregnancy. In: Genetics in Medicine. 2011 ; Vol. 13, No. 5. pp. 429-436.
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